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					Birth defects state profile – Alaska                                                                           January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Alaska and US
                                                                      †                                         ‡
                                                                Alaska                                       US
                                                  Average annual          Birth             Average annual             Birth
Defects                                            no. of cases        prevalence*           no. of cases           prevalence*
Central nervous system
 Anencephalus                                           0                    0                   1,009                  2.51
 Spina bifida without anencephalus                      5                   5.25                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                        5                   4.47                 1,901                  4.73
 Tetralogy of Fallot                                    6                   6.22                 1,574                  3.92
 Atrioventricular septal defect (also known             5                   4.86                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        4                   3.70                  975                   2.43
Orofacial
 Cleft lip with and without cleft palate               16                  15.95                 4,209                 10.47
 Cleft palate without cleft lip                        15                  14.59                 2,567                  6.39
Musculoskeletal
 Upper limb defect                                      2                   1.75                 1,521                  3.79
 Lower limb defect                                      5                   5.06                  763                   1.90
 Gastroschisis                                          --                   --                  1,497                  3.73
Chromosomal
 Down syndrome                                         16                  15.37                 5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Alaska’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       Since 1996 the Alaska Birth Defects Registry (ABDR)
    unknown.                                                          has monitored the statewide prevalence of birth
 • Many birth defects happen during early pregnancy,                  defects. The ABDR is a population-based passive
    often before a woman knows she is pregnant.                       surveillance system that relies on multiple-source
 • Addressing health risks and behaviors before                       reporting. Physicians, hospitals, and other health care
    pregnancy can reduce the risk of poor birth                       facilities and providers must report children up to six
    outcomes, including some birth defects.                           years of age who have been diagnosed with or treated
 • All women who could become pregnant should take                    for a birth defect. Reportable birth defects in Alaska
    400 micrograms of folic acid every day to help                    include all major congenital anomalies as well as fetal
    prevent serious defects of the baby’s brain and                   alcohol spectrum disorders (FASD) for which we
    spinal cord.                                                      routinely conduct case verification studies.

  Program information:                                                How birth defects data are used in Alaska
                                                                      The ABDR has monitored over 140,000 births and has
  Sandra Collins, MPH                                                 information on approximately 34,000 children born with
  Alaska Birth Defects Registry (ABDR)                                birth defects. Data are used to provide counts and
  E-mail: Sandra.Collins@alaska.gov                                   prevalence estimates for birth defects occurring in
  Website: www.epi.alaska.gov/mchepi/ABDR                             Alaska. This data is used by agencies statewide to
                                                                      target prevention messages, interventions and health
                                                                      care services; define populations at increased risk for
                                                                      birth defects; and identify clusters of conditions that
                                                                      may be related to environmental exposures. Data is
                                                                      published periodically and is posted on our website.

 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Arizona                                                                          January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Arizona and US
                                                                       †                                        ‡
                                                                Arizona                                      US
                                                  Average annual           Birth            Average annual             Birth
Defects                                            no. of cases         prevalence*          no. of cases           prevalence*
Central nervous system
 Anencephalus                                           15                  1.53                 1,009                  2.51
 Spina bifida without anencephalus                      36                  3.83                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                        38                  4.04                 1,901                  4.73
 Tetralogy of Fallot                                    39                  4.12                 1,574                  3.92
 Atrioventricular septal defect (also known
                                                        --                   --                  1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        21                  2.19                  975                   2.43
Orofacial
 Cleft lip with and without cleft palate               120                 12.67                 4,209                 10.47
 Cleft palate without cleft lip                        78                  8.26                  2,567                  6.39
Musculoskeletal
 Upper limb defect                                      27                  2.88                 1,521                  3.79
 Lower limb defect                                      10                  1.03                  763                   1.90
 Gastroschisis                                          49                  5.12                 1,497                  3.73
Chromosomal
   Down syndrome                                       115                   12.09                5,132                12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2003-2006
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Arizona’s Birth Defect Monitoring Program
 • The causes of about 70% of birth defects are                       Since 1986 the Arizona program has monitored the
    unknown.                                                          prevalence of major birth defects among Arizona
 • Many birth defects happen during early pregnancy,                  infants in all 15 counties. Arizona Department of
    often before a woman knows she is pregnant.                       Health Services staff obtain this information by visiting
 • Addressing health risks and behaviors before                       all Arizona hospitals and selected clinics. A rapid
    pregnancy can reduce the risk of poor birth                       reporting system provides current information on neural
    outcomes, including some birth defects.                           tube defects, cleft lip/palate, and gastroschisis within 6
 • All women who could become pregnant should take                    months of birth. Duplicate records are merged and the
    400 micrograms of folic acid every day to help                    data used to generate summary reports. The program
    prevent serious defects of the baby’s brain and                   operates through state funds and federal grant monies.
    spinal cord.
                                                                      How birth defects data are used in Arizona
  Program information:                                                Data are used for birth defects prevention activities and
                                                                      improving access to health services through
  Timothy J. Flood, MD                                                partnerships, publications, dissemination of reports,
  Arizona Birth Defects Monitoring Program (ABDMP)                    community awareness, and educational activities. The
  E-mail: floodt@azdhs.gov                                            program monitors the state trend of spina bifida, which
                                                                      is often preventable by consuming the vitamin folic acid
  Viral G. Joshi, MPH                                                 before conception. The goal of the rapid reporting
  Arizona Birth Defects Monitoring Program (ABDMP)
                                                                      system is to provide families of living children with
  E-mail: viral.joshi@azdhs.gov
                                                                      information and resources for follow-up medical and
  Website: http://www.azdhs.gov/phs/phstats/bdr/index.htm             social services.


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Arkansas                                                                         January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Arkansas and US
                                                                       †                                        ‡
                                                               Arkansas                                      US
                                                  Average annual           Birth            Average annual             Birth
Defects                                            no. of cases         prevalence*          no. of cases           prevalence*
Central nervous system
 Anencephalus                                           12                   3.16                1,009                  2.51
 Spina bifida without anencephalus                      15                   4.01                1,477                  3.68
Cardiovascular
 Transposition of great arteries                        22                   5.70                1,901                  4.73
 Tetralogy of Fallot                                    12                   3.22                1,574                  3.92
 Atrioventricular septal defect (also known             10                   2.74                1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        10                   2.64                 975                   2.43
Orofacial
 Cleft lip with and without cleft palate                47                   12.39               4,209                 10.47
 Cleft palate without cleft lip                         24                    6.33               2,567                  6.39
Musculoskeletal
 Upper limb defect                                      14                   3.69                1,521                  3.79
 Lower limb defect                                       9                   2.43                 763                   1.90
 Gastroschisis                                          21                   5.64                1,497                  3.73
Chromosomal
 Down syndrome                                          46                   11.92               5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                                  Arkansas’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                            Since 1980, the Arkansas Reproductive Health
    unknown.                                                               Monitoring System (ARHMS) has monitored the
 • Many birth defects happen during early pregnancy,                       occurrence of birth defects within the state. Using
    often before a woman knows she is pregnant.                            state-wide, active surveillance methods, ARHMS
 • Addressing health risks and behaviors before                            gathers information on more than 200 adverse birth
    pregnancy can reduce the risk of poor birth                            conditions affecting Arkansas residents. Rates of
    outcomes, including some birth defects.                                these conditions are computed for the state and
                                                                           closely monitored by public health professionals.
 • All women who could become pregnant should take
                                                                           ARHMS responds to community and individual
    400 micrograms of folic acid every day to help
                                                                           requests regarding information on birth defects.
    prevent serious defects of the baby’s brain and spinal
                                                                           ARHMS serves as a lead agency on birth defect
    cord.
                                                                           prevention activities, including folic acid education
  Program information:                                                     among the healthcare provider and childbearing
                                                                           populations.
  Bridget S. Mosley, MPH
  Arkansas Reproductive Health Monitoring System                           How birth defects data are used in Arkansas
  E-mail: MosleyBridgetS@uams.edu                                          Data derived from ARHMS allow researchers to
                                                                           identify trends and patterns in the prevalence of birth
  Charlotte A. Hobbs, MD, PhD                                              defects in the state. These ARHMS data provide the
  Arkansas Center for Birth Defects Research and Prevention
                                                                           basis of the research studies investigating the causes
  E-mail : HobbsCharlotte@uams.edu
                                                                           of birth defects. ARHMS data also serve as a tool to
  Website: http://arbirthdefectsresearch.uams.edu/                         evaluate the impact of prevention programs.


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – California                                                                        January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, California (8 representative counties) and US
                                                                              †                                  ‡
                                                         California (8 counties)                             US
                                                  Average annual              Birth         Average annual              Birth
Defects                                            no. of cases           prevalence*        no. of cases            prevalence*
Central nervous system
 Anencephalus                                           20                  3.07                 1,009                  2.51
 Spina bifida without anencephalus                      28                  4.27                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                        12                  1.90                 1,901                  4.73
 Tetralogy of Fallot                                    23                  3.50                 1,574                  3.92
 Atrioventricular septal defect (also known             26                  3.99                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        17                  2.58                   975                  2.43
Orofacial
 Cleft lip with and without cleft palate                63                  9.73                 4,209                  10.47
 Cleft palate without cleft lip                         33                  5.00                 2,567                   6.39
Musculoskeletal
 Upper limb defect                                      21                  3.25                 1,521                  3.79
 Lower limb defect                                       9                  1.32                  763                   1.90
 Gastroschisis                                          33                  5.09                 1,497                  3.73
Chromosomal
 Down syndrome                                          90                  13.84                5,132                  12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                              California’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                        The California Birth Defects Monitoring Program (CBDMP)
    unknown.                                                           has been an active ascertainment, population based registry
                                                                       since 1982. Data collection and reporting procedures—
 • Many birth defects happen during early pregnancy,
                                                                       reflecting 25 years of experience—ensure that data are
    often before a woman knows she is pregnant.                        accurate, comprehensive, consistent and useful. CBDMP
 • Addressing health risks and behaviors before                        currently monitors a subset, over 40% (n=225,000) of annual
    pregnancy can reduce the risk of poor birth                        births in California, which represents the state’s geographic,
    outcomes, including some birth defects.                            environmental and racial/ethnic diversity. For consistency,
 • All women who could become pregnant should take                     data for this report is drawn from a subset of core counties,
    400 micrograms of folic acid every day to help                     with ~70,000 births annually, which have been monitored for
    prevent serious defects of the baby’s brain and                    over 20 years. To maximize the registry’s effectiveness,
                                                                       CBDMP focuses on gathering complete data on conditions
    spinal cord.
                                                                       with medical and public health impact.
  Program information:
                                                                       How birth defects data are used in California
                                                                       The CBDMP registry data are used for ongoing surveillance
  Barbara Warmerdam
                                                                       to monitor rates and trends of select birth defects and to
  California Birth Defects Monitoring Program
                                                                       provide outcome data for the pregnancy blood samples
  E-mail: barbara.warmerdam@cdph.ca.gov
                                                                       included in the CBDMP serum bank. Registry data are used
                                                                       to evaluate public health programs such as the Title V state
  Marcia Ehinger, MD
                                                                       performance measure and to address public concerns about
  California Birth Defects Monitoring Program
                                                                       birth defects and the environment. Registry data are used to
  E-mail: marcia.ehinger@cdph.ca.gov
                                                                       support birth defects research that includes multiple
                                                                       epidemiologic approaches.
  Website: www.cdph.ca.gov/programs/CBDMP


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Colorado                                                                         January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Colorado and US
                                                                       †                                        ‡
                                                               Colorado                                      US
                                                  Average annual           Birth            Average annual             Birth
Defects                                            no. of cases         prevalence*          no. of cases           prevalence*
Central nervous system
 Anencephalus                                           10                  1.47                 1,009                  2.51
 Spina bifida without anencephalus                      24                  3.53                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                        26                  3.70                 1,901                  4.73
 Tetralogy of Fallot                                    25                  3.61                 1,574                  3.92
 Atrioventricular septal defect (also known             30                  4.37                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        23                  3.33                  975                   2.43
Orofacial
 Cleft lip with and without cleft palate                83                 12.06                 4,209                 10.47
 Cleft palate without cleft lip                         62                  8.99                 2,567                  6.39
Musculoskeletal
 Upper limb defect                                      26                  3.82                 1,521                  3.79
 Lower limb defect                                      14                  2.00                  763                   1.90
 Gastroschisis                                          31                  4.54                 1,497                  3.73
Chromosomal
 Down syndrome                                         143                 20.70                 5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.
                                                                      Colorado’s Birth Defect Surveillance System
 Preventing birth defects
                                                                      Case ascertainment: combination of active and passive
 • The causes of about 70% of birth defects are                       case ascertainment
    unknown.                                                          Vital records: birth certificates, death certificates, and
 • Many birth defects happen during early pregnancy,                  fetal death certificates
    often before a woman knows she is pregnant.                       Other state based registries: newborn hearing screening
 • Addressing health risks and behaviors before                       program, newborn metabolic screening program
    pregnancy can reduce the risk of poor birth                       Delivery hospitals: disease index or discharge index,
    outcomes, including some birth defects.                           postmortem/pathology logs, specialty outpatient clinics,
 • All women who could become pregnant should take                    selected postmortem pathology sites
    400 micrograms of folic acid every day to help                    Pediatric & tertiary care hospitals: disease index or
    prevent serious defects of the baby’s brain and                   discharge index, postmortem/pathology logs, specialty
    spinal cord.                                                      outpatient clinics, selected postmortem pathology sites
                                                                      Other specialty facilities: cytogenetic laboratories,
                                                                      genetic counseling /clinical genetics facilities
  Program information:
                                                                      Other sources: physician reports, Medicaid, selected
                                                                      sites for fetal alcohol syndrome and muscular dystrophy.
  Margaret Frances Ruttenber, MSPH
  Colorado Responds to Children with Special Needs
  E-mail: margaret.ruttenber@state.co.us                              How birth defects data are used in Colorado
                                                                      Routine statistical monitoring, public health program
  Carol Stanton, MBA                                                  evaluation, baseline rates, rates by demographic and
  Colorado Responds to Children with Special Needs                    other variables, monitoring outbreaks and cluster
  E-mail: carol.stanton@state.co.us                                   investigation, time trends, capture-recapture analysis,
                                                                      observed vs. expected analysis, epidemiologic studies.
  Website: http://www.cdphe.state.co.us


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Florida                                                                          January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Florida and US
                                                                      †                                         ‡
                                                                Florida                                      US
                                                  Average annual           Birth            Average annual             Birth
Defects                                            no. of cases         prevalence*          no. of cases           prevalence*
Central nervous system
 Anencephalus                                           9                   0.41                 1,009                  2.51
 Spina bifida without anencephalus                      65                  2.96                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                       100                  4.59                 1,901                  4.73
 Tetralogy of Fallot                                   118                  5.37                 1,574                  3.92
 Atrioventricular septal defect (also known
                                                        93                  4.25                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        63                  2.86                  975                   2.43
Orofacial
 Cleft lip with and without cleft palate               180                  8.22                 4,209                 10.47
 Cleft palate without cleft lip                        114                  5.22                 2,567                  6.39
Musculoskeletal
 Upper limb defect                                      40                  1.83                 1,521                  3.79
 Lower limb defect                                      29                  1.32                  763                   1.90
 Gastroschisis                                          84                  3.82                 1,497                  3.73
Chromosomal
   Down syndrome                                       291                   13.28                5,132                12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Florida’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       Since 1999, The Florida Birth Defects Registry has
    unknown.                                                          monitored the prevalence of birth defects in Florida.
 • Many birth defects happen during early pregnancy,                  The Registry is a statewide, population-based passive
    often before a woman knows she is pregnant.                       surveillance program with information on more than
 • Addressing health risks and behaviors before                       55,000 infants born with serious birth defects. The
    pregnancy can reduce the risk of poor birth                       registry was established to identify and describe the
    outcomes, including some birth defects.                           patterns of birth defects in Florida and to respond to
 • All women who could become pregnant should take                    community concerns about possible environmental
    400 micrograms of folic acid every day to help                    associations.
    prevent serious defects of the baby’s brain and
    spinal cord.                                                      How birth defects data are used in Florida
                                                                      Through multiple sources of information, the Registry
  Program information:                                                monitors all births in Florida to identify risk factors,
                                                                      develop prevention and intervention programs,
  Jane A. Correia, BS                                                 investigate causes, promote scientific research and
  Florida Birth Defects Registry (FBDR)                               collaboration and assist families with referral to
  E-mail: Jane_Correia@doh.state.fl.us                                services. Registry data on the occurrence of neural
                                                                      tube defects was used to obtain funding for the
  Sharon Watkins, PhD                                                 purchase of multi-vitamins containing folic acid for
  Florida Birth Defects Registry (FBDR)
                                                                      distribution to minority and underserved women.
  E-mail: Sharon_Watkins@doh.state.fl.us

  Website: www.fbdr.org


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Georgia                                                                          January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Georgia (metropolitan Atlanta 5-county area) and US
                                                             †                                                  ‡
                                                     Georgia (metro-Atlanta area)                            US
                                                  Average annual           Birth            Average annual             Birth
Defects                                            no. of cases        prevalence*           no. of cases           prevalence*
Central nervous system
 Anencephalus                                          11                   2.11                 1,009                  2.51
 Spina bifida without anencephalus                     22                   4.17                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                       14                   2.72                 1,901                  4.73
 Tetralogy of Fallot                                   25                   4.71                 1,574                  3.92
 Atrioventricular septal defect (also known            26                   4.90                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                       11                   2.07                  975                   2.43
Orofacial
 Cleft lip with and without cleft palate               49                   9.30                 4,209                 10.47
 Cleft palate without cleft lip                        29                   5.51                 2,567                  6.39
Musculoskeletal
 Upper limb defect                                     14                   2.68                 1,521                  3.79
 Lower limb defect                                      6                   1.07                  763                   1.90
 Gastroschisis                                         17                   3.33                 1,497                  3.73
Chromosomal
 Down syndrome                                         73                  14.01                 5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006 in 5-county area of metropolitan Atlanta
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Georgia’s Birth Defect Surveillance systems
 • The causes of about 70% of birth defects are                       For over 40 years, the Metropolitan Atlanta Congenital
    unknown.                                                          Defects Program (MACDP) has monitored the
 • Many birth defects happen during early pregnancy,                  prevalence of birth defects in 5 central counties in the
    often before a woman knows she is pregnant.                       metropolitan Atlanta area and served as a model for
 • Addressing health risks and behaviors before                       other state birth defect surveillance systems. The
    pregnancy can reduce the risk of poor birth                       Georgia Birth Defects Reporting and Information
    outcomes, including some birth defects.                           System (GBDRIS) was recently established by the
 • All women who could become pregnant should take                    Georgia Division of Public Health to provide information
    400 micrograms of folic acid every day to help                    on the rates and patterns of birth defects across the
    prevent serious defects of the baby’s brain and                   state.
    spinal cord.
                                                                      How birth defects data are used in Georgia
  Program information:                                                MACDP has monitored over 1.1 million births and has
  Janet Cragan, MD, MPH                                               information on over 41,000 children born with birth
  Metropolitan Atlanta Congenital Defects Program                     defects. MACDP data are used to observe unusual
  E-mail: macdp@cdc.gov                                               patterns and to detect changes in the occurrence of
  Website: http://www.cdc.gov/ncbddd/bd/macdp.htm                     birth defects. These data provide the basis for
                                                                      research studies into the cause of birth defects and
  Katherine Kahn, MPH                                                 also serve to evaluate the impact of prevention
  Georgia Division of Public Health
                                                                      programs. MACDP also partners with the GBDRIS
  E-mail: kckahn@dhr.state.ga.us
  Website: http://health.state.ga.us/epi/mch/birthdefects/            which provides referrals to programs and health
  gbdris/index.asp                                                    services for at-risk children.


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Hawaii                                                                           January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Hawaii and US
                                                                       †                                        ‡
                                                                  Hawaii                                     US
                                                    Average annual          Birth           Average annual             Birth
Defects                                              no. of cases        prevalence*         no. of cases           prevalence*
Central nervous system
 Anencephalus                                             5                 2.64                 1,009                  2.51
 Spina bifida without anencephalus                        5                 2.78                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                          9                 4.73                 1,901                  4.73
 Tetralogy of Fallot                                      6                 3.06                 1,574                  3.92
 Atrioventricular septal defect (also known               4                 1.95                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                          2                 0.83                  975                   2.43
Orofacial
 Cleft lip with and without cleft palate                 16                 8.63                 4,209                 10.47
 Cleft palate without cleft lip                          12                 6.68                 2,567                  6.39
Musculoskeletal
 Upper limb defect                                        5                 2.50                 1,521                  3.79
 Lower limb defect                                        2                 1.11                  763                   1.90
 Gastroschisis                                            8                 4.31                 1,497                  3.73
Chromosomal
 Down syndrome                                           22                11.96                 5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2005
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                              Hawaii’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                        Since 1988, the Hawaii Birth Defects Program (HBDP)
    unknown.                                                           has been an accurate, complete, and timely source of
 • Many birth defects happen during early pregnancy,                   statewide data on infants with specific birth defects and
    often before a woman knows she is pregnant.                        pregnancies resulting in adverse reproductive
 • Addressing health risks and behaviors before                        outcomes. It annually collects demographic,
    pregnancy can reduce the risk of poor birth                        diagnostic, and health risk information on
    outcomes, including some birth defects.                            approximately 800 to 1,000 infants diagnosed with a
 • All women who could become pregnant should take                     birth defect. HBDP is now a program in the Hawaii
    400 micrograms of folic acid every day to help                     State Department of Health.
    prevent serious defects of the baby’s brain and
    spinal cord.                                                       How birth defects data are used in Hawaii
                                                                       HBDP is established by state law to: 1) collect
  Program information:                                                 surveillance information on birth defects and other
                                                                       adverse reproductive outcomes; 2) report the
  Hawaii Birth Defects Program                                         incidence, trends, and causes of birth defects and other
  Children with Special Health Needs Branch                            adverse reproductive outcomes; 3) report information
  Hawaii State Department of Health                                    for the development of prevention strategies to reduce
                                                                       the incidence of birth defects and other adverse
  E-mail: cheryl.gramberg@doh.hawaii.gov                               reproductive outcomes; and 4) develop strategies to
                                                                       improve the access to health and early intervention
  Website: http://hawaii.gov/health/family-child-
  health/genetics/hbdhome.html
                                                                       services for children with birth defects. (H.R.S.
                                                                       §321.422).


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Idaho                                                                            January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Idaho and US
                                                                        †                                       ‡
                                                                Idaho                                        US
                                                  Average annual               Birth        Average annual             Birth
Defects                                            no. of cases             prevalence*      no. of cases           prevalence*
Central nervous system
 Anencephalus                                           --                      --               1,009                  2.51
 Spina bifida without anencephalus                      --                      --               1,477                  3.68
Cardiovascular
 Transposition of great arteries                        --                      --               1,901                  4.73
 Tetralogy of Fallot                                    --                      --               1,574                  3.92
 Atrioventricular septal defect (also known
                                                        --                      --               1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        --                      --                975                   2.43
Orofacial
 Cleft lip with and without cleft palate                --                      --               4,209                 10.47
 Cleft palate without cleft lip                         --                      --               2,567                  6.39
Musculoskeletal
 Upper limb defect                                      --                      --               1,521                  3.79
 Lower limb defect                                      --                      --                763                   1.90
 Gastroschisis                                          --                      --               1,497                  3.73
Chromosomal
   Down syndrome                                        --                     --                 5,132                12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                               Idaho’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                         Idaho updated their birth certificate in 2004 to reflect
    unknown.                                                            the changes made to the U.S. standard birth certificate.
 • Many birth defects happen during early pregnancy,                    Idaho does not have a birth defect registry.
    often before a woman knows she is pregnant.
 • Addressing health risks and behaviors before
    pregnancy can reduce the risk of poor birth
    outcomes, including some birth defects.
 • All women who could become pregnant should take
    400 micrograms of folic acid every day to help
    prevent serious defects of the baby’s brain and
    spinal cord.

  Program information:

  Pam Harder
  Vital Statistics Supervisor
  E-mail: harderp@dhw.idaho.gov

  Mitch Scoggins
  Children’s Special Health Program
  E-mail: scogginm@dhw.idaho.gov




 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Illinois                                                                           January 2010

About 1 out of every 33 babies is             Birth defects cause one in five                 Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a                per year in hospital costs alone
                                              year old.                                       in the U.S.

Selected birth defects counts and birth prevalence, Illinois and US
                                                                           †                                     ‡
                                                                Illinois                                        US
                                                  Average annual                  Birth        Average annual           Birth
Defects                                            no. of cases                prevalence*      no. of cases         prevalence*
Central nervous system
 Anencephalus                                           33                        1.81             1,009                2.51
 Spina bifida without anencephalus                      51                        2.85             1,477                3.68
Cardiovascular
 Transposition of great arteries                        48                        2.66             1,901                4.73
 Tetralogy of Fallot                                    59                        3.27             1,574                3.92
 Atrioventricular septal defect (also known
                                                        65                        3.58             1,748                4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        36                        1.99              975                 2.43
Orofacial
 Cleft lip with and without cleft palate                156                       8.65             4,209                10.47
 Cleft palate without cleft lip                         87                        4.84             2,567                 6.39
Musculoskeletal
 Upper limb defect                                      50                        2.77             1,521                3.79
 Lower limb defect                                      26                        1.45              763                 1.90
 Gastroschisis                                          59                        3.26             1,497                3.73
Chromosomal
   Down syndrome                                       237                   13.15                5,132                12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                                  Illinois’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                            The Illinois Department of Public Health’s (IDPH)
    unknown.                                                               Adverse Pregnancy Outcomes Reporting System
 • Many birth defects happen during early pregnancy,                       (APORS) is a statewide system, established in 1986.
    often before a woman knows she is pregnant.                            Information is collected about children with birth
 • Addressing health risks and behaviors before                            defects, very-low birth weights, fetal or neonatal death,
    pregnancy can reduce the risk of poor birth                            prenatal exposure to controlled substances, serious
    outcomes, including some birth defects.                                infections, disorders and conditions. This information
 • All women who could become pregnant should take                         includes demographic and medical data on infants and
    400 micrograms of folic acid every day to help                         their mothers, as well as diagnostic and treatment
    prevent serious defects of the baby’s brain and                        information.
    spinal cord.
                                                                           How birth defects data are used in Illinois
  Program information:                                                     APORS’ purpose is twofold. First, families of infants
                                                                           reported to APORS are contacted by local health
  Trish Wilson, MPA                                                        department nurses to offer a series of home visits and
  Adverse Pregnancy Outcomes Reporting System (APORS)                      assistance. Infants with some conditions are referred
  E-mail: trish.wilson@illinois.gov                                        to other IDPH programs for additional follow-up.
                                                                           Second, the collected information is used for public
  Jane Fornoff, D. Phil.                                                   health surveillance of birth defects and other adverse
  Adverse Pregnancy Outcomes Reporting System (APORS)
                                                                           pregnancy outcomes to monitor the status of these
  E-mail: jane.fornoff@illinois.gov
                                                                           conditions for reporting, policy development and
  Web-site: www.idph.state.il.us/about/epi/apors.htm                       research.


 National Birth Defects Prevention Network                                                                       www.nbdpn.org
Birth defects state profile – Indiana                                                                          January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Indiana and US
                                                                      †                                         ‡
                                                                Indiana                                      US
                                                  Average annual           Birth            Average annual             Birth
Defects                                            no. of cases         prevalence*           no.of cases           prevalence*
Central nervous system
 Anencephalus                                           5                   0.55                 1,009                  2.51
 Spina bifida without anencephalus                      35                  4.05                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                        41                  4.71                 1,901                  4.73
 Tetralogy of Fallot                                    29                  3.33                 1,574                  3.92
 Atrioventricular septal defect (also known
                                                        37                  4.19                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        17                  1.92                  975                   2.43
Orofacial
 Cleft lip with and without cleft palate                79                  9.04                 4,209                 10.47
 Cleft palate without cleft lip                         56                  6.43                 2,567                  6.39
Musculoskeletal
 Upper limb defect                                      22                  2.50                 1,521                  3.79
 Lower limb defect                                       9                  1.06                  763                   1.90
 Gastroschisis                                          24                  2.78                 1,497                  3.73
Chromosomal
   Down syndrome                                       93                    10.70                5,132                12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2003-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Indiana’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       The Indiana Birth Defects and Problems Registry
    unknown.                                                          (IBDPR) is a population-based surveillance system that
 • Many birth defects happen during early pregnancy,                  seeks to promote fetal, infant, and child health. The
    often before a woman knows she is pregnant.                       purpose of the Registry is to prevent birth defects and
 • Addressing health risks and behaviors before                       childhood developmental disabilities and to enhance
    pregnancy can reduce the risk of poor birth                       the quality of life of affected Indiana residents. The
    outcomes, including some birth defects.                           1986 Indiana General Assembly enacted a law to
 • All women who could become pregnant should take                    establish the registry. In 2001, the law was amended
    400 micrograms of folic acid every day to help                    to allow additional data sources to be used to improve
    prevent serious defects of the baby’s brain and                   the quality of the data. IBDPR data is currently
    spinal cord.                                                      available for children born beginning in 2003.

  Program information:                                                How birth defects data are used in Indiana
                                                                      Data from the Indiana Birth Problems Registry is used
  Courtney B. Eddy, MT (ASCP), MS                                     to detect trends in birth defects and suggest areas for
  Indiana State Department of Health                                  further study; to identify epidemiological factors
  E-mail: Ceddy@isdh.in.gov                                           associated with birth defects; to address community
                                                                      concerns about the environmental effects on birth
  Robert R. Bowman, MS, MA, MS                                        outcomes; to evaluate education, screening, and
  Indiana State Department of Health
                                                                      prevention programs; and to establish efficient referral
  E-mail: bobbowman@isdh.in.gov
                                                                      systems that provide special services for the children
  Website: www.birthdefects.in.gov                                    with identified birth defects and their families.


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Iowa                                                                                 January 2010

About 1 out of every 33 babies is             Birth defects cause one in five                   Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a                  per year in hospital costs alone
                                              year old.                                         in the U.S.

Selected birth defects counts and birth prevalence, Iowa and US
                                                                          †                                        ‡
                                                                   Iowa                                           US
                                                  Average annual                  Birth          Average annual           Birth
Defects                                            no. of cases                prevalence*        no. of cases         prevalence*
Central nervous system
 Anencephalus                                          12                          2.99               1,009               2.51
 Spina bifida without anencephalus                     19                          4.90               1,477               3.68
Cardiovascular
 Transposition of great arteries                       13                          3.40               1,901               4.73
 Tetralogy of Fallot                                   18                          4.54               1,574               3.92
 Atrioventricular septal defect (also known
                                                       30                          7.79               1,748               4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                         8                         2.11                975                2.43
Orofacial
 Cleft lip with and without cleft palate               50                         12.79               4,209               10.47
 Cleft palate without cleft lip                        31                         7.99                2,567                6.39
Musculoskeletal
 Upper limb defect                                     18                          4.59               1,521               3.79
 Lower limb defect                                      9                          2.22                763                1.90
 Gastroschisis                                         19                          4.85               1,497               3.73
Chromosomal
   Down syndrome                                       66                    16.96                5,132                12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                                     Iowa’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                               The mission of the Iowa Registry for Congenital and
    unknown.                                                                  Inherited Disorders is to:
 • Many birth defects happen during early pregnancy,                              • maintain statewide surveillance for collecting
    often before a woman knows she is pregnant.                                        information on selected congenital and
 • Addressing health risks and behaviors before                                        inherited disorders in Iowa,
    pregnancy can reduce the risk of poor birth                                   • monitor annual trends in occurrence and
    outcomes, including some birth defects.                                            mortality of these disorders, and
 • All women who could become pregnant should take                                • provide data for research studies and
    400 micrograms of folic acid every day to help                                     educational activities for the prevention and
    prevent serious defects of the baby’s brain and                                    treatment of these disorders.
    spinal cord.
                                                                              How birth defects data are used in Iowa
  Program information:                                                        Since 1983, the Iowa Registry for Congenital and
                                                                              Inherited Disorders has worked to advance the health
  Paul A. Romitti, PhD                                                        of Iowa children by monitoring the entire state for
  Iowa Registry for Congenital and Inherited Disorders                        congenital and inherited disorders. By providing data
  E-mail: paul-romitti@uiowa.edu                                              for research studies and educational programs, the
                                                                              Registry works for the prevention and treatment of
  Kris Hardin
                                                                              these disorders. The Registry also provides important
  Iowa Registry for Congenital and Inherited Disorders
                                                                              information to state policy makers and public health
  E-mail:kristine-hardin@uiowa.edu
                                                                              professionals.



 National Birth Defects Prevention Network                                                                         www.nbdpn.org
Birth defects state profile – Kansas                                                                           January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Kansas and US
                                                                      †                                         ‡
                                                                Kansas                                       US
                                                  Average annual          Birth             Average annual             Birth
Defects                                            no. of cases        prevalence*           no. of cases           prevalence*
Central nervous system
 Anencephalus                                          33                   2.63                 1,009                  2.51
 Spina bifida without anencephalus                     27                   2.16                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                        --                   --                  1,901                  4.73
 Tetralogy of Fallot                                    --                   --                  1,574                  3.92
 Atrioventricular septal defect (also known
                                                        --                   --                  1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        --                   --                   975                   2.43
Orofacial
 Cleft lip with and without cleft palate               102                  8.14                 4,209                 10.47
 Cleft palate without cleft lip                        35                   2.79                 2,567                  6.39
Musculoskeletal
 Upper limb defect                                     --                    --                  1,521                  3.79
 Lower limb defect                                     --                    --                   763                   1.90
 Gastroschisis                                         39                   3.11                 1,497                  3.73
Chromosomal
   Down syndrome                                       119                    9.50                5,132                12.78
* per 10,000 live births
†
  estimates based on reported Kansas resident live and still birth data from birth years 2006-2008
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Kansas’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       Congenital anomalies have been reported on the Kansas
    unknown.                                                          birth certificate since 1979. Kansas has conducted limited
 • Many birth defects happen during early pregnancy,                  surveillance activities under congenital malformations
    often before a woman knows she is pregnant.                       reporting under Kansas administrative regulations (KAR
 • Addressing health risks and behaviors before                       28-1-4) since 1982 with fetal alcohol syndrome added in
    pregnancy can reduce the risk of poor birth                       1986. In 2004, Kansas statutes annotated (KSA 65-1241
    outcomes, including some birth defects.                           through 65-1246) provided statutory reporting of all
                                                                      patients under 5 years of age with a primary diagnosis of a
 • All women who could become pregnant should take
                                                                      congenital anomaly or abnormal condition and
    400 micrograms of folic acid every day to help                    establishing a birth defects surveillance system. No
    prevent serious defects of the baby’s brain and                   funding was appropriated to implement the new law.
    spinal cord.
                                                                      How birth defects data are used in Kansas
  Program information:                                                Congenital anomalies reported through two data sources
                                                                      (birth certificates and the birth defects prevention program
  Garry Kelley, MS
                                                                      reporting form) have been used to provide baseline rates
  Bureau of Family Health
                                                                      of morbidity and mortality from different congenital defects,
  Kansas Department of Health and Environment
  E-mail: gkelley@kdheks.gov
                                                                      monitor secular and temporal trends, and identify unusual
                                                                      changes in disease patterns. Birth defect export files (live
  Jamie S. Kim, MPH                                                   and still birth) from the Vital Statistics Integrated
  Bureau of Family Health                                             Information System have been utilized for notifying of the
  Kansas Department of Health and Environment                         availability of services and supports through Children with
  E-mail: jkim@kdheks.gov                                             Special Health Care Needs, early intervention, and other
                                                                      programs.

 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Kentucky                                                                         January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Kentucky and US
                                                                       †                                        ‡
                                                               Kentucky                                      US
                                                  Average annual           Birth            Average annual             Birth
Defects                                            no. of cases         prevalence*          no. of cases           prevalence*
Central nervous system
 Anencephalus                                           10                  1.77                 1,009                  2.51
 Spina bifida without anencephalus                      19                  3.36                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                        21                  3.71                 1,901                  4.73
 Tetralogy of Fallot                                    22                  3.83                 1,574                  3.92
 Atrioventricular septal defect (also known
                                                        20                  3.59                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        15                  2.59                  975                   2.43
Orofacial
 Cleft lip with and without cleft palate                57                 10.02                 4,209                 10.47
 Cleft palate without cleft lip                         34                 6.01                  2,567                  6.39
Musculoskeletal
 Upper limb defect                                      13                  2.36                 1,521                  3.79
 Lower limb defect                                       9                  1.53                  763                   1.90
 Gastroschisis                                          20                  3.59                 1,497                  3.73
Chromosomal
   Down syndrome                                       75                    13.32                5,132                12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2004-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.
                                                                      Kentucky’s Birth Defect Surveillance System
 Preventing birth defects
                                                                      For over 10 years, the Kentucky Birth Surveillance
 • The causes of about 70% of birth defects are
                                                                      Registry (KBSR) has monitored the prevalence of birth
    unknown.
                                                                      defects statewide. KBSR has served as a model for
 • Many birth defects happen during early pregnancy,                  other states as both passive and active surveillance are
    often before a woman knows she is pregnant.                       performed in order to obtain accurate data as well as
 • Addressing health risks and behaviors before                       linking hospital discharge with vital records. KBSR was
    pregnancy can reduce the risk of poor birth                       developed as a collaborative effort with the March of
    outcomes, including some birth defects.                           Dimes, the Kentucky Hospital Association, the KBSR
 • All women who could become pregnant should take                    Advisory Committee, and various advocacy
    400 micrograms of folic acid every day to help                    organizations. KBSR collects information on inpatients
    prevent serious defects of the baby’s brain and                   from acute care hospitals and birthing centers as
    spinal cord.                                                      required by law. Medical laboratories licensed in KY
                                                                      are also required to report data.
  Program information:
                                                                      How birth defects data are used in Kentucky
  Sandy G. Fawbush, RN
  Kentucky Birth Surveillance Registry (KBSR)
                                                                      KBSR has information on approximately 90,000
  E-mail: sandy.fawbush@ky.gov                                        children born with birth defects since 1998. KBSR has
                                                                      submitted data for studies by the World Health
  Troi J Cunningham, RN                                               Organization, Centers for Disease Control and
  Kentucky Birth Surveillance Registry (KBSR)                         Prevention, National Birth Defects Prevention Network
  E-mail: troi.cunningham@ky.gov                                      and local agencies such as the Down Syndrome
                                                                      Association for evaluating service needs across the
  Website: http://chfs.ky.gov/dph/ach/ecd/kbsr.htm                    state.

 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Louisiana                                                                        January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Louisiana and US
                                                                                                                ‡
                                                               Louisiana                                     US
                                                  Average annual            Birth           Average annual             Birth
Defects                                            no. of cases          prevalence*         no. of cases           prevalence*
Central nervous system
 Anencephalus                                           --                   --                  1,009                  2.51
 Spina bifida without anencephalus                      --                   --                  1,477                  3.68
Cardiovascular
 Transposition of great arteries                        --                   --                  1,901                  4.73
 Tetralogy of Fallot                                    --                   --                  1,574                  3.92
 Atrioventricular septal defect (also known             --                   --
                                                                                                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        --                   --                   975                   2.43
Orofacial
 Cleft lip with and without cleft palate                --                   --                  4,209                 10.47
 Cleft palate without cleft lip                         --                   --                  2,567                  6.39
Musculoskeletal
 Upper limb defect                                      --                   --                  1,521                  3.79
 Lower limb defect                                      --                   --                   763                   1.90
 Gastroschisis                                          --                   --                  1,497                  3.73
Chromosomal
   Down syndrome                                        --                     --                 5,132                12.78
* per 10,000 live births
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Louisiana’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       The Louisiana Birth Defects Monitoring Network
    unknown.                                                          (LBDMN) is a relatively new program that initiated data
 • Many birth defects happen during early pregnancy,                  collection in 2005. LBDMN currently tracks birth defects
    often before a woman knows she is pregnant.                       in 37 parishes (covering an estimated 80% of yearly
 • Addressing health risks and behaviors before                       births); statewide data are not yet available. Gradual
    pregnancy can reduce the risk of poor birth                       expansion to statewide coverage is planned over the
    outcomes, including some birth defects.                           next few years, subject to the availability of adequate
 • All women who could become pregnant should take                    funding.
    400 micrograms of folic acid every day to help
    prevent serious defects of the baby’s brain and                   How birth defects data are used in Louisiana
    spinal cord.                                                      LBDMN provides information on locally available
                                                                      medical, educational and social services to families
  Program information:                                                whose children are included in the birth defects
                                                                      registry. When statewide data are available, LBDMN
  Cheryll Sheard, MBA                                                 will be able to provide rates of the conditions listed
  Louisiana Birth Defects Monitoring Network (LBDMN)                  above. LBDMN data will also be used to detect
  E-mail: cheryll.sheard@la.gov                                       changes over time and study unusual patterns in the
                                                                      occurrence of birth defects (i.e. "clusters"). Most
  Website: http://www.dhh.louisiana.gov/offices/?ID=261               importantly, statewide data can be used to identify
                                                                      high-risk populations and to target birth defects
                                                                      prevention programs to these groups as needed.



 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Maine                                                                           January 2010

About 1 out of every 33 babies is          Birth defects cause one in five                 Birth defects lead to $2.6 billion
born with a major birth defect.            deaths among infants less than a                per year in hospital costs alone
                                           year old.                                       in the U.S.

Selected birth defects counts and birth prevalence, Maine and US
                                                                      +                                         ‡
                                                              Maine                                          US
                                                Average annual         Birth                Average annual             Birth
Defects                                          no. of cases       prevalence**             no. of cases           prevalence*
Central nervous system
 Anencephalus                                           7                   1.00                 1,009                  2.51
 Spina bifida without anencephalus                     14                   2.00                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                       24                   3.42                 1,901                  4.73
 Tetralogy of Fallot                                   22                   3.14                 1,574                  3.92
 Atrioventricular septal defect                        --                    --                  1,748                  4.36
 Hypoplastic left heart syndrome                       17                   2.42                   975                  2.43
Orofacial
 Cleft lip with and without cleft palate               50                   7.13                 4,209                 10.47
 Cleft palate without cleft lip                        44                   6.27                 2,567                  6.39
Musculoskeletal
 Upper limb defect                                     --                    --                  1,521                  3.79
 Lower limb defect                                     --                    --                   763                   1.90
 Gastroschisis                                         27                   3.85                 1,497                  3.73
Chromosomal
 Down syndrome                                         60                   8.55                 5,429                 12.78
*per 10,000 live births
**per 10,000 live births to Maine residents
+
  estimates based on pooled data from birth years 2003-2007
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Maine’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       The Maine Birth Defects Program was established in
    unknown.                                                          1999. Rules were officially adopted in April 2003 at
 • Many birth defects happen during early pregnancy,                  which time data collection began. The Maine Birth
    often before a woman knows she is pregnant.                       Defects Program is currently collecting data on 22 birth
 • Addressing health risks and behaviors before                       defects which include major heart defects, cleft lip,
    pregnancy can reduce the risk of poor birth                       palate and lip and palate, reduction deformities of
    outcomes, including some birth defects.                           upper and lower limbs, hypospadias and Down
 • All women who could become pregnant should take                    Syndrome. The program is working towards electronic
    400 micrograms of folic acid every day to prevent                 submission from all data sources.
    serious defects of the baby’s brain and spinal cord.
                                                                      How birth defects data are used in Maine
                                                                      Maine Birth Defects Program uses the data collected to
  Program information:                                                assess the full impact of birth defects on Maine children
  Maine Birth Defects Program                                         and their families, to improve access to specialty
                                                                      services for families and locate resources for emotional
  Toni G. Wall, MPA                                                   and economic support, to monitor trends related to the
  E-mail: toni.g.wall@maine.gov                                       prevalence of selected birth defects in Maine and to
                                                                      educate provider and the general public on prevention
  Diane C. Haberman, MSW, LCSW                                        strategies to decrease the incidence of birth defects in
  E-mail: Diane.Haberman@maine.gov
                                                                      Maine.
  Website:
  http://www.maine.gov/dhhs/boh/cshn/birth_defects/index.html


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Maryland                                                                         January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Maryland and US
                                                                       †                                        ‡
                                                               Maryland                                      US
                                                  Average annual           Birth            Average annual             Birth
Defects                                            no. of cases         prevalence*          no. of cases           prevalence*
Central nervous system
 Anencephalus                                           25                  3.49                 1,009                  2.51
 Spina bifida without anencephalus                      26                  3.69                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                        --                   --                  1,901                  4.73
 Tetralogy of Fallot                                    --                   --                  1,574                  3.92
 Atrioventricular septal defect (also known             --                   --                  1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        --                   --                   975                   2.43
Orofacial
 Cleft lip with and without cleft palate                67                  9.45                 4,209                 10.47
 Cleft palate without cleft lip                         30                  4.16                 2,567                  6.39
Musculoskeletal
 Upper limb defect                                      25                  3.57                 1,521                  3.79
 Lower limb defect                                      19                  2.62                  763                   1.90
 Gastroschisis                                          --                   --                  1,497                  3.73
Chromosomal
   Down syndrome                                       96                    13.45                5,132                12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.
                                                                      Maryland’s Birth Defect Surveillance System
 Preventing birth defects                                             Since 1984 Maryland’s Birth Defects Reporting and
 • The causes of about 70% of birth defects are                       Information System (BDRIS) has monitored the 12
    unknown.                                                          sentinel birth defects designated by the World Health
 • Many birth defects happen during early pregnancy,                  Organization (WHO). During the Maryland legislative
    often before a woman knows she is pregnant.                       session of 2008, the mandate for surveillance of birth
 • Addressing health risks and behaviors before                       defects was expanded to all birth defects documented
    pregnancy can reduce the risk of poor birth                       as present or suspected at delivery or live birth of an
    outcomes, including some birth defects.                           infant. BDRIS is a passive surveillance system residing
 • All women who could become pregnant should take                    in a MS Access dedicated database. Birth defects data
    400 micrograms of folic acid every day to help                    is verified through electronic record matching with the
    prevent serious defects of the baby’s brain and                   Vital Statistics Administration’s birth certificate and fetal
    spinal cord.                                                      death certificates records. Birth certificates and fetal
                                                                      death certificates with a documented birth defect or
  Program information:                                                birth defects that do not match a record in the BDRIS
                                                                      files are individually reviewed for inclusion in the BDRIS
  Susan R. Panny, MD                                                  database.
  Maryland Birth Defects Reporting and Information System
  E-mail: PannyS@dhmh.state.md.us                                     How birth defects data are used in Maryland
                                                                      BDRIS data is available to populate surveys for needs
  Anne D. Terry, RN (BSN), BS, MA
                                                                      assessments, access to care, and regional mapping of
  Maryland Birth Defects Reporting and Information System
  E-mail: terrya@dhmh.state.md.us                                     the distribution of selected birth defects. BDRIS has a
                                                                      working partnership with the Environment Public Health
                                                                      Tracking System (EPHT). BDRIS data is available to
                                                                      stakeholders for planning and policy deliberations.

 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Massachusetts                                                                    January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Massachusetts and US
                                                                          †                                     ‡
                                                            Massachusetts                                    US
                                                  Average annual          Birth             Average annual             Birth
Defects                                            no. of cases        prevalence*           no. of cases           prevalence*
Central nervous system
 Anencephalus                                           5                     0.58               1,009                  2.51
 Spina bifida without anencephalus                     13                     1.63               1,477                  3.68
Cardiovascular
 Transposition of great arteries                       25                     3.17               1,901                  4.73
 Tetralogy of Fallot                                   39                     5.00               1,574                  3.92
 Atrioventricular septal defect (also known            41                     5.21               1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                       11                     1.37                 975                  2.43
Orofacial
 Cleft lip with and without cleft palate               57                     7.21               4,209                 10.47
 Cleft palate without cleft lip                        45                     5.77               2,567                  6.39
Musculoskeletal
 Upper limb defect                                     24                     3.07               1,521                  3.79
 Lower limb defect                                     10                     1.24                763                   1.90
 Gastroschisis                                         24                     3.00               1,497                  3.73
Chromosomal
 Down syndrome                                         97                     12.29              5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Massachusetts’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are
    unknown.                                                          The Massachusetts Birth Defects Monitoring Program
 • Many birth defects happen during early pregnancy,                  (BDMP) is a state-wide, population-based program that
    often before a woman knows she is pregnant.                       collects data on infants (liveborn or stillborn) diagnosed
 • Addressing health risks and behaviors before                       with a birth defect. Based in the Massachusetts
    pregnancy can reduce the risk of poor birth                       Department of Public Health, monitoring activities are
    outcomes, including some birth defects.                           mandated by state law and delineated by state
 • All women who could become pregnant should take                    regulations. Covering approximately 77,000 births per
    400 micrograms of folic acid every day to help                    year, the Massachusetts BDMP produces data reports,
    prevent serious defects of the baby’s brain and                   maintains a website, and collaborates with researchers
    spinal cord.                                                      and public health colleagues on research, data
                                                                      requests and environmental investigations.
  Program information:
                                                                      How birth defects data are used in Massachusetts
  Marlene Anderka, ScD, MPH
  Massachusetts Birth Defects Monitoring Program                      The Massachusetts BDMP collects data in order to:
  E-mail: marlene.anderka@state.ma.us                                 identify trends; search for causative factors linked with
                                                                      birth defects; address community concerns about birth
  Cathy Higgins, BA                                                   defects; provide information and referral to families of
  Massachusetts Birth Defects Monitoring Program
                                                                      children with birth defects; and measure the success of
  E-mail: cathleen.higgins@state.ma.us
                                                                      screening and prevention efforts.
  Website: www.mass.gov/birthdefectscenter


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Minnesota                                                                        January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Minnesota (Hennepin and Ramsey Counties) and US
                                                   Minnesota (Hennepin and Ramsey
                                                                          †                                     ‡
                                                            Counties only)                                   US
                                                  Average annual            Birth           Average annual             Birth
Defects                                            no. of cases         prevalence*          no. of cases           prevalence*
Central nervous system
 Anencephalus                                           2                   0.62                 1,009                  2.51
 Spina bifida without anencephalus                      12                  4.92                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                        18                  7.18                 1,901                  4.73
 Tetralogy of Fallot                                    19                  7.79                 1,574                  3.92
 Atrioventricular septal defect (also known
                                                        16                  6.36                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        8                   3.28                  975                   2.43
Orofacial
 Cleft lip with and without cleft palate                33                  13.5                 4,209                 10.47
 Cleft palate without cleft lip                         22                  9.02                 2,567                  6.39
Musculoskeletal
 Upper limb defect                                       6                  2.26                 1,521                  3.79
 Lower limb defect                                       5                  1.85                  763                   1.90
 Gastroschisis                                          17                  6.77                 1,497                  3.73
Chromosomal
   Down syndrome                                       53                     21.7                5,132                12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2006-2007
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Minnesota’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are
    unknown.                                                          The Birth Defects Program began active surveillance
 • Many birth defects happen during early pregnancy,                  data collection in mid-2005. The program gathers data
    often before a woman knows she is pregnant.                       about babies diagnosed within the first year of life with
 • Addressing health risks and behaviors before                       ICD-CM9 codes 740 -760. Data are available for
    pregnancy can reduce the risk of poor birth                       babies born in Hennepin and Ramsey counties in
    outcomes, including some birth defects.                           Minnesota (about 50% of state births).
 • All women who could become pregnant should take
    400 micrograms of folic acid every day to help                    How birth defects data are used in Minnesota
    prevent serious defects of the baby’s brain and
    spinal cord.                                                      Birth defects data are used to:
                                                                           • Monitor prevalence trends of birth defects to
  Program information:                                                         detect emerging health concerns and identify
                                                                               affected populations,
  Erik Zabel, PhD, MPH                                                     • Ensure appropriate services are provided to
  Minnesota Birth Defects Information System                                   affected families,
  E-mail: erik.zabel@state.mn.us                                           • Prevent birth defects through targeted
                                                                               education,
  Daniel Symonik, PhD
  Minnesota Birth Defects Information System                               • Educate physicians and the public regarding
  E-mail: daniel.symonik@state.mn.us                                           birth defects, and
                                                                           • Stimulate research on risk factors, treatment,
                                                                               prevention, and the cure of birth defects.


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Mississippi                                                                      January 2010
About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Mississippi and US
                                                                         †                                      ‡
                                                              Mississippi                                    US
                                                  Average annual             Birth          Average annual             Birth
Defects                                            no. of cases           prevalence*        no. of cases           prevalence*
Central nervous system
 Anencephalus                                           2                    0.41                1,009                  2.51
 Spina bifida without anencephalus                      14                   3.13                1,477                  3.68
Cardiovascular
 Transposition of great arteries                        17                   3.82                1,901                  4.73
 Tetralogy of Fallot                                    15                   3.36                1,574                  3.92
 Atrioventricular septal defect (also known
                                                        10                   2.26                1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                         7                   1.62                 975                   2.43
Orofacial
 Cleft lip with and without cleft palate                33                   7.64                4,209                 10.47
 Cleft palate without cleft lip                         20                   4.52                2,567                  6.39
Musculoskeletal
 Upper limb defect                                       6                   1.45                1,521                  3.79
 Lower limb defect                                       4                   0.87                 763                   1.90
 Gastroschisis                                           --                   --                 1,497                  3.73
Chromosomal
   Down syndrome                                       32                     7.41                5,132                12.78
* per 10,000 live births
†
  estimates based on data from birth years 2002-2006 (excluding 2005)
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                              Mississippi’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                        The Birth Defects Surveillance registry is housed in the
    unknown.                                                           Office of Child and Adolescent Health, Division of
 • Many birth defects happen during early pregnancy,                   Genetic Services. Section 41-21-205 of the Mississippi
    often before a woman knows she is pregnant.                        Code established a birth defects surveillance registry in
 • Addressing health risks and behaviors before                        the Mississippi State Department of Health. Effective
    pregnancy can reduce the risk of poor birth                        January 2000, all hospitals, clinics, and other health
    outcomes, including some birth defects.                            facilities that serve patients from birth to 21 years of
 • All women who could become pregnant should take                     age began reporting to the Mississippi Birth Defects
    400 micrograms of folic acid every day to help                     Surveillance Registry.
    prevent serious defects of the baby’s brain and
    spinal cord.                                                       How birth defects data are used in Mississippi
                                                                       The data reported to the Mississippi Birth Defects
  Program information:                                                 Surveillance Registry is monitored regularly and
                                                                       systematically, for changes in incidence or other
  Beryl Polk, PhD                                                      unusual patterns suggesting preventable causes. The
  Mississippi Birth Defects Registry                                   data is used to ensure that children identified with birth
  E-mail: bpolk@msdh.state.ms.us                                       defects are placed in a system of care.
  Pat Terry, MSM, LSW
  Mississippi Birth Defects Registry
  E-mail: patricia.terry@msdh.state.ms.us




 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Missouri                                                                        January 2010

About 1 out of every 33 babies is          Birth defects cause one in five                 Birth defects lead to $2.6 billion
born with a major birth defect.            deaths among infants less than a                per year in hospital costs alone
                                           year old.                                       in the U.S.

Selected birth defects counts and birth prevalence, Missouri and US
                                                                                                                ‡
                                                              Missouri                                       US
                                                Average annual            Birth             Average annual             Birth
Defects                                          no. of cases          prevalence*           no. of cases           prevalence*
Central nervous system
 Anencephalus                                          13                   1.7                  1,009                  2.51
 Spina bifida without anencephalus                     33                   4.3                  1,477                  3.68
Cardiovascular
 Transposition of great arteries                       36                   0.8                  1,901                  4.73
  Tetralogy of Fallot                                  35                   4.6                  1,574                  3.92

 Atrioventricular septal defect                        --                    --                  1,748                  4.36
 Hypoplastic left heart syndrome                       28                   3.6                    975                  2.43
Orofacial
 Cleft lip with and without cleft palate               81                   10.4                 4,209                 10.47
 Cleft palate without cleft lip                        51                    6.5                 2,567                  6.39
Musculoskeletal
 Upper limb defect                                     20                   2.6                  1,521                  3.79
 Lower limb defect                                     16                   2.1                   763                   1.90
 Gastroschisis                                         --                    --                  1,497                  3.73
Chromosomal
 Down syndrome                                        114                   14.6                 5,429                 12.78
* per 10,000 live births
†
  estimates based on data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Missouri’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       The Missouri birth defects registry was established in
    unknown.                                                          1985 and includes births from 1980. The registry
 • Many birth defects happen during early pregnancy,                  utilizes passive surveillance, linking birth defects
    often before a woman knows she is pregnant.                       reported on birth certificates, infant death certificates,
 • Addressing health risks and behaviors before                       newborn and pediatric hospital patient abstract reports,
    pregnancy can reduce the risk of poor birth                       and Missouri Department of Health and Senior
    outcomes, including some birth defects.                           Services program enrollment data.
 • All women who could become pregnant should take
    400 micrograms of folic acid every day to help
    prevent serious defects of the baby’s brain and
    spinal cord.                                                      How birth defects data are used in Missouri
                                                                      Data are used to monitor birth defect rates throughout
  Program information:                                                the state and to detect changes in birth defect
                                                                      occurrence. Data are also used to provide referral to
  Janice M. Bakewell                                                  services such as early intervention; to evaluate
  Missouri Birth Defects Registry                                     prevention programs; and to support program and
  E-mail: janice.bakewell@dhss.mo.gov                                 service planning.




 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Montana                                                                          January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Montana and US
                                                                                                                ‡
                                                                Montana                                      US
                                                  Average annual           Birth            Average annual             Birth
Defects                                            no. of cases         prevalence*          no. of cases           prevalence*
Central nervous system
 Anencephalus                                           --                   --                  1,009                  2.51
 Spina bifida without anencephalus                      --                   --                  1,477                  3.68
Cardiovascular
 Transposition of great arteries                        --                   --                  1,901                  4.73
 Tetralogy of Fallot                                    --                   --                  1,574                  3.92
 Atrioventricular septal defect (also known             --                   --                  1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        --                   --                    975                  2.43
Orofacial
 Cleft lip with and without cleft palate                --                   --                  4,209                 10.47
 Cleft palate without cleft lip                         --                   --                  2,567                  6.39
Musculoskeletal
 Upper limb defect                                      --                   --                  1,521                  3.79
 Lower limb defect                                      --                   --                   763                   1.90
 Gastroschisis                                          --                   --                  1,497                  3.73
Chromosomal
 Down syndrome                                          --                   --                  5,132                 12.78
* per 10,000 live births
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Montana’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are
    unknown.                                                          Due to lack of funding, Montana suspended its birth
 • Many birth defects happen during early pregnancy,                  defects surveillance system in 2005
    often before a woman knows she is pregnant.
 • Addressing health risks and behaviors before
    pregnancy can reduce the risk of poor birth
    outcomes, including some birth defects.
 • All women who could become pregnant should take
    400 micrograms of folic acid every day to help
    prevent serious defects of the baby’s brain and
    spinal cord.

  Program information:

  Linda S. Beischel, MB(ASCP)CMDLMCM
  Newborn Screening Follow-up Coordinator
  Laboratory Services Bureau
  Department of Public Health and Human Services
  E-mail: lbeischel@mt.gov




 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – New Hampshire                                                                    January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, New Hampshire and US
                                                                           †                                    ‡
                                                            New Hampshire                                    US
                                                  Average annual          Birth             Average annual             Birth
Defects                                            no. of cases       prevalence*            no. of cases           prevalence*
Central nervous system
 Anencephalus                                           1                      1.04              1,009                  2.51
 Spina bifida without anencephalus                      0                       0                1,477                  3.68
Cardiovascular
 Transposition of great arteries                        2                      1.82              1,901                  4.73
 Tetralogy of Fallot                                    7                      5.73              1,574                  3.92
 Atrioventricular septal defect (also known             6                      4.43              1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        4                      2.87                975                  2.43
Orofacial
 Cleft lip with and without cleft palate               11                      8.34              4,209                 10.47
 Cleft palate without cleft lip                        10                      7.82              2,567                  6.39
Musculoskeletal
 Upper limb defect                                      2                      1.30              1,521                  3.79
 Lower limb defect                                      1                      1.04               763                   1.90
 Gastroschisis                                          4                      2.87              1,497                  3.73
Chromosomal
 Down syndrome                                         21                  16.16                 5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2003-2006
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.
                                                                    New Hampshire’s Birth Defect Surveillance System
 Preventing birth defects                                           The NH Birth Conditions Program (NHBCP) is a public health
 • The causes of about 70% of birth defects are                     surveillance program that has been collecting state-wide data
    unknown.                                                        since 2003. The mission of the program is to: monitor 45
 • Many birth defects happen during early pregnancy,                birth conditions in New Hampshire; develop birth conditions
    often before a woman knows she is pregnant.                     prevention strategies; support epidemiological research into
 • Addressing health risks and behaviors before                     the causes and public health impact of birth conditions;
    pregnancy can reduce the risk of poor birth                     improve the ability of families to have access to intervention
    outcomes, including some birth defects.                         programs and services for infants and children with birth
 • All women who could become pregnant should take                  conditions; and to educate the community, health care
    400 micrograms of folic acid every day to help                  providers, and service agencies regarding birth conditions.
    prevent serious defects of the baby’s brain and
    spinal cord.                                                    How birth defects data are used in New Hampshire
                                                                    From 2003 - 2006, over 1100 birth conditions were identified
  Program information:                                              in babies born in New Hampshire with an overall annual
                                                                    prevalence of approximate 2% of all births. Knowledge of the
  John B. Moeschler, MD, MS                                         occurrence of birth conditions in New Hampshire will help to
  New Hampshire Birth Conditions Program                            monitor the occurrence of these conditions, target prevention
  E-mail: john.b.moeschler@hitchcock.org
                                                                    activities and educate families about the services that are
  Stephanie D. Miller, RN, MSN, MPH                                 available to them.
  New Hampshire Birth Conditions Program                            Better tracking of when and where birth conditions occur and
  E-mail: stephanie.d.miller@hitchcock.org                          potential links to environmental factors will provide critical
                                                                    information that may help prevent birth conditions in the
  Website: www.nhbcp.org                                            future.

 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – New Jersey                                                                       January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, New Jersey and US
                                                                         †                                      ‡
                                                              New Jersey                                     US
                                                  Average annual           Birth            Average annual             Birth
Defects                                            no. of cases         prevalence*          no. of cases           prevalence*
Central nervous system
 Anencephalus                                            4                   0.37                1,009                  2.51
 Spina bifida without anencephalus                      25                   2.16                1,477                  3.68
Cardiovascular
 Transposition of great arteries                        43                   3.73                1,901                  4.73
 Tetralogy of Fallot                                    44                   3.81                1,574                  3.92
 Atrioventricular septal defect (also known             31                   2.72                1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        20                   1.72                  975                  2.43
Orofacial
 Cleft lip with and without cleft palate                81                   7.05                4,209                 10.47
 Cleft palate without cleft lip                         67                   5.83                2,567                  6.39
Musculoskeletal
 Upper limb defect                                      31                   2.68                1,521                  3.79
 Lower limb defect                                      19                   1.69                 763                   1.90
 Gastroschisis                                          22                   1.93                1,497                  3.73
Chromosomal
 Down syndrome                                        140                    12.21               5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             New Jersey’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       This is the oldest such program in the country. Since
    unknown.                                                          1928, the New Jersey Special Child Health Services
 • Many birth defects happen during early pregnancy,                  (SCHS) Registry has registered children having birth
    often before a woman knows she is pregnant.                       defects and other special needs conditions. State law
 • Addressing health risks and behaviors before                       requires the reporting of children diagnosed with
    pregnancy can reduce the risk of poor birth                       congenital defects through age five to the SCHS
    outcomes, including some birth defects.                           Registry. The Registry has confidential records of all
 • All women who could become pregnant should take                    birth defects that occur in New Jersey in order to
    400 micrograms of folic acid every day to help                    conduct thorough and complete epidemiologic surveys
    prevent serious defects of the baby’s brain and                   of birth defects and to plan for and provide services to
    spinal cord.                                                      children with birth defects and their families.

  Program information:                                                How birth defects data are used in New Jersey
                                                                      New Jersey has monitored nearly 3 million births since
  Leslie M. Beres-Sochka, MS Hyg, CPM                                 1985 and has information on over 200,000 children
  Special Child Health Services Registry                              either born with birth defects or diagnosed with special
  E-mail: Leslie.Beres-Sochka@doh.state.nj.us                         needs conditions. SCHS data are used to report
                                                                      incidence of birth defects in New Jersey. The New
  Mary M. Knapp, MSN                                                  Jersey SCHS Registry serves as a national model for
  Special Child Health Services Registry
                                                                      linking registered children and their families to various
  E-mail: mary.knapp@doh.state.nj.us
                                                                      services. Families are directly linked with local county-
                                                                      based case management units; coordination includes
                                                                      health, educational, financial, and social services.

 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – New York                                                                         January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, New York and US
                                                                        †                                       ‡
                                                              New York                                       US
                                                  Average annual          Birth             Average annual             Birth
Defects                                            no. of cases        prevalence*           no. of cases           prevalence*
Central nervous system
 Anencephalus                                            11                 0.44                 1,009                  2.51
 Spina bifida without anencephalus                       50                 2.02                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                        69                  2.79                 1,901                  4.73
 Tetralogy of Fallot                                   116                  4.70                 1,574                  3.92
 Atrioventricular septal defect (also known              72                 2.90                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                         61                 2.46                   975                  2.43
Orofacial
 Cleft lip with and without cleft palate               180                  7.27                 4,209                 10.47
 Cleft palate without cleft lip                        139                  5.63                 2,567                  6.39
Musculoskeletal
 Upper limb defect                                       44                 1.79                 1,521                  3.79
 Lower limb defect                                       22                 0.87                  763                   1.90
 Gastroschisis                                           52                 2.09                 1,497                  3.73
Chromosomal
 Down syndrome                                         297                  12.01                5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             New York’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       The New York State Department of Health Congenital
    unknown.                                                          Malformations Registry (CMR) is one of the largest
 • Many birth defects happen during early pregnancy,                  statewide, population-based birth defects registries in the
    often before a woman knows she is pregnant.                       nation. The CMR was established by enactment of Part
 • Addressing health risks and behaviors before                       22 of the State Sanitary Code in 1981. Reporting to the
    pregnancy can reduce the risk of poor birth                       registry began in October 1982. Hospitals and
    outcomes, including some birth defects.                           physicians are required to report children up to two years
 • All women who could become pregnant should take                    of age diagnosed with a malformation. Case reports are
    400 micrograms of folic acid every day to help                    received electronically on the Internet using the Health
    prevent serious defects of the baby’s brain and                   Provider Network, a secure system for electronically
    spinal cord.                                                      collecting and distributing health related data.
                                                                      How birth defects data are used in New York
  Program information:                                                The birth defects data are used for routine statistical
  New York State Congenital Malformations Registry
                                                                      monitoring of birth defects in New York, generating
  Charlotte M Druschel, MD, MPH                                       annual report that summarizes birth defects by type, by
  E-mail: cmd05@health.state.ny.us                                    organ system, and by county, and provide basis for
                                                                      research studies in searching for causes of birth defects.
  Ying Wang, PhD, MPH                                                 The CMR data are also used to link children with services
  E-mail: wxy01@health.state.ny.us                                    in their home communities such as Early Intervention
                                                                      Program, to ensure that families of children identified in
  Website:
  www.health.state.ny.us/diseases/congenital_malformations/cmrhome    the Registry can find available resources and support
  .htm                                                                groups.

 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – North Carolina                                                                   January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, North Carolina and US
                                                                          †                                     ‡
                                                            North Carolina                                   US
                                                  Average annual            Birth           Average annual             Birth
Defects                                            no. of cases          prevalence*         no. of cases           prevalence*
Central nervous system
 Anencephalus                                           29                    2.35               1,009                  2.51
 Spina bifida without anencephalus                      49                    3.99               1,477                  3.68
Cardiovascular
 Transposition of great arteries                        33                    2.70               1,901                  4.73
 Tetralogy of Fallot                                    53                    4.36               1,574                  3.92
 Atrioventricular septal defect (also known             62                    5.07               1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        32                    2.64                 975                  2.43
Orofacial
 Cleft lip with and without cleft palate               111                    9.08               4,209                 10.47
 Cleft palate without cleft lip                         70                    5.69               2,567                  6.39
Musculoskeletal
 Upper limb defect                                      39                    3.15               1,521                  3.79
 Lower limb defect                                      17                    1.39                763                   1.90
 Gastroschisis                                          45                    3.70               1,497                  3.73
Chromosomal
 Down syndrome                                         160                    13.07              5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2003-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             North Carolina’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are
    unknown.                                                          The N.C. Birth Defects Monitoring Program (NCBDMP)
 • Many birth defects happen during early pregnancy,                  is a statewide surveillance system that tracks the
    often before a woman knows she is pregnant.                       occurrence of birth defects among all North Carolina
 • Addressing health risks and behaviors before                       infants. The NCBDMP is located in the State Center for
    pregnancy can reduce the risk of poor birth                       Health Statistics in the N.C. Division of Public Health.
    outcomes, including some birth defects.                           The program monitors over 130,000 births each year
 • All women who could become pregnant should take                    among nearly 100 hospitals and medical facilities
    400 micrograms of folic acid every day to help                    statewide. The NCBDMP works with a number of
    prevent serious defects of the baby’s brain and                   partners to improve the health status of all infants and
    spinal cord.                                                      children in North Carolina.

  Program information for the N.C. Birth Defects                      How birth defects data are used in North Carolina
  Monitoring Program:
                                                                      Information collected by the NCBDMP is used in many
  Robert E. Meyer, PhD                                                ways, including: monitoring geographic patterns and
  E-mail: robert.meyer@dhhs.nc.gov                                    trends over time, evaluating the effectiveness of
                                                                      services and interventions, improving access to
                                                                      services for affected families, providing statistical data
  Jennifer Stock                                                      to various audiences, and engaging in research aimed
  E-mail Jennifer.stock@dhhs.nc.gov                                   at understanding the causes of birth defects and
                                                                      identifying potential new opportunities for prevention.


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – North Dakota                                                                     January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, North Dakota and US
                                                                         †                                      ‡
                                                             North Dakota                                    US
                                                  Average annual           Birth            Average annual             Birth
Defects                                            no. of cases         prevalence*          no. of cases           prevalence*
Central nervous system
 Anencephalus                                           2                    2.20                1,009                  2.51
 Spina bifida without anencephalus                      4                    5.38                1,477                  3.68
Cardiovascular
 Transposition of great arteries                        3                    3.67                1,901                  4.73
 Tetralogy of Fallot                                    3                    3.42                1,574                  3.92
 Atrioventricular septal defect (also known             3                    3.18                1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        3                    3.18                  975                  2.43
Orofacial
 Cleft lip with and without cleft palate                6                    7.09                4,209                 10.47
 Cleft palate without cleft lip                         11                   13.45               2,567                  6.39
Musculoskeletal
 Upper limb defect                                      <1                   0.73                1,521                  3.79
 Lower limb defect                                      <1                   0.49                 763                   1.90
 Gastroschisis                                          --                    --                 1,497                  3.73
Chromosomal
 Down syndrome                                          8                    10.27               5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             North Dakota’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       The North Dakota Birth Defects Monitoring System was
    unknown.                                                          established in 2003 as a means of identifying and
 • Many birth defects happen during early pregnancy,                  collecting information about babies born with certain
    often before a woman knows she is pregnant.                       birth defects in North Dakota. The North Dakota Birth
 • Addressing health risks and behaviors before                       Defects Monitoring program is a passive surveillance
    pregnancy can reduce the risk of poor birth                       system. Data are collected and linked from three
    outcomes, including some birth defects.                           secondary data sources. Because of the low numbers
 • All women who could become pregnant should take                    of both resident births and occurrences of individual
    400 micrograms of folic acid every day to help                    birth defects in North Dakota, rates for each birth defect
    prevent serious defects of the baby’s brain and                   are averaged over five consecutive years to improve
    spinal cord.                                                      statistical stability of the data.
  Program information:
                                                                      How birth defects data are used in North Dakota
  Devaiah Muthappa Muccatira, MS
                                                                      Data from the North Dakota Birth Defects Monitoring
  North Dakota Birth Defects Monitoring System                        System is used to: 1) report incidence and prevalence
  E-mail: dmuccatira@nd.gov                                           of birth defects, 2) increase awareness of birth defects
                                                                      and identified risk factors, 3) help researchers and
  Tamara Lynn Gallup-Millner, RN, MPA                                 health-care providers learn more about preventing
  North Dakota Birth Defects Monitoring System                        future problems, and 4) assure that children born with
  E-mail: tgallupmillner@nd.gov                                       birth defects have access to needed health-care and
                                                                      other services.
  Website: http://www.ndhealth.gov/cshs/cshs.html


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Oklahoma                                                                         January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Oklahoma and US
                                                                        †                                       ‡
                                                              Oklahoma                                       US
                                                  Average annual          Birth             Average annual             Birth
Defects                                            no. of cases        prevalence*           no. of cases           prevalence*
Central nervous system
 Anencephalus                                          12                   2.25                 1,009                  2.51
 Spina bifida without anencephalus                     19                   3.60                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                       18                   3.45                 1,901                  4.73
 Tetralogy of Fallot                                   21                   4.07                 1,574                  3.92
 Atrioventricular septal defect (also known            22                   4.22                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                       15                   2.83                   975                  2.43
Orofacial
 Cleft lip with and without cleft palate               71                   13.79                4,209                 10.47
 Cleft palate without cleft lip                        42                    8.14                2,567                  6.39
Musculoskeletal
 Upper limb defect                                     21                   4.11                 1,521                  3.79
 Lower limb defect                                     12                   2.32                  763                   1.90
 Gastroschisis                                         31                   6.08                 1,497                  3.73
Chromosomal
 Down syndrome                                         64                   12.36                5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Oklahoma’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       The Oklahoma Birth Defects Registry (OBDR) began
    unknown.                                                          operation in 1992, in Oklahoma County. In 1993, Tulsa
 • Many birth defects happen during early pregnancy,                  and Cleveland Counties were added. Statewide
    often before a woman knows she is pregnant.                       surveillance of birth defects was established in 1994.
 • Addressing health risks and behaviors before                       The mission of the OBDR is to provide statewide
    pregnancy can reduce the risk of poor birth                       surveillance of birth defects to reduce the prevalence of
    outcomes, including some birth defects.                           birth defects through prevention education, monitoring
 • All women who could become pregnant should take                    trends and analyzing data.
    400 micrograms of folic acid every day to help
    prevent serious defects of the baby’s brain and                   How birth defects data are used in Oklahoma
    spinal cord.                                                      The OBDR has several prevention efforts to reduce
                                                                      birth defects in Oklahoma: folic acid education for
  Program information:                                                women of childbearing age; recurrence prevention of
                                                                      neural tube defects (spina bifida and anencephaly); and
  Kay A. Pearson, MS                                                  preconception training for health care workers. Data is
  Oklahoma Birth Defects Registry                                     analyzed to monitor trends, identify changes or
  E-mail: kayp@health.ok.gov                                          clustering of birth defects, evaluate potential effects of
                                                                      environmental contaminants and provide geospatial
  Web site:                                                           analysis. The OBDR conducted a statewide needs
  http://www.ok.gov/health/Child_and_Family_Health/Screenin
                                                                      assessment of birth defects and is utilizing the
  g,_Special_Services_and_Sooner_Start/Oklahoma_Birth_Def
  ects_Registry_/index.html                                           information to establish a system of referral for families
                                                                      of children with birth defects to programs and services.


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Oregon                                                                           January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Oregon and US
                                                                                                                ‡
                                                                Oregon                                       US
                                                  Average annual          Birth             Average annual             Birth
Defects                                            no. of cases        prevalence*           no. of cases           prevalence*
Central nervous system
 Anencephalus                                           --                   --                  1,009                  2.51
 Spina bifida without anencephalus                      --                   --                  1,477                  3.68
Cardiovascular
 Transposition of great arteries                        --                   --                  1,901                  4.73
 Tetralogy of Fallot                                    --                   --                  1,574                  3.92
 Atrioventricular septal defect (also known             --                   --                  1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        --                   --                    975                  2.43
Orofacial
 Cleft lip with and without cleft palate                --                   --                  4,209                 10.47
 Cleft palate without cleft lip                         --                   --                  2,567                  6.39
Musculoskeletal
 Upper limb defect                                      --                   --                  1,521                  3.79
 Lower limb defect                                      --                   --                   763                   1.90
 Gastroschisis                                          --                   --                  1,497                  3.73
Chromosomal
 Down syndrome                                          --                   --                  5,132                 12.78
* per 10,000 live births
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Oregon Birth Defect Surveillance
 • The causes of about 70% of birth defects are
    unknown.                                                          Oregon does not have a birth defects surveillance
 • Many birth defects happen during early pregnancy,                  system.
    often before a woman knows she is pregnant.
 • Addressing health risks and behaviors before
    pregnancy can reduce the risk of poor birth
    outcomes, including some birth defects.
 • All women who could become pregnant should take
    400 micrograms of folic acid every day to help
    prevent serious defects of the baby’s brain and
    spinal cord.




  Program information:

  Kenneth D. Rosenberg, MD, MPH
  Oregon Public Health Division
  E-mail: ken.d.rosenberg@state.or.us



 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Pennsylvania                                                                     January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Pennsylvania and US
                                                                         †                                      ‡
                                                             Pennsylvania                                    US
                                                  Average annual           Birth            Average annual             Birth
Defects                                            no. of cases         prevalence*          no. of cases           prevalence*
Central nervous system
 Anencephalus                                           --                    --                 1,009                  2.51
 Spina bifida without anencephalus                      28                   3.25                1,477                  3.68
Cardiovascular
 Transposition of great arteries                        --                    --                 1,901                  4.73
 Tetralogy of Fallot                                    --                    --                 1,574                  3.92
 Atrioventricular septal defect (also known             --                    --                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        --                    --                   975                  2.43
Orofacial
 Cleft lip with and without cleft palate                --                    --                 4,209                 10.47
 Cleft palate without cleft lip                         --                    --                 2,567                  6.39
Musculoskeletal
 Upper limb defect                                      --                    --                 1,521                  3.79
 Lower limb defect                                      --                    --                  763                   1.90
 Gastroschisis                                          --                    --                 1,497                  3.73
Chromosomal
 Down syndrome                                         141                   9.79                5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2001-2003
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Pennsylvania’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       Pennsylvania currently does not have a birth defects
    unknown.                                                          surveillance system in place.
 • Many birth defects happen during early pregnancy,
    often before a woman knows she is pregnant.
 • Addressing health risks and behaviors before
    pregnancy can reduce the risk of poor birth
    outcomes, including some birth defects.
 • All women who could become pregnant should take
    400 micrograms of folic acid every day to help
    prevent serious defects of the baby’s brain and
    spinal cord.                                                      How birth defects data are used in Pennsylvania
                                                                      The Genetic Services Section supports vendors to
  Program information:                                                provide access to comprehensive genetic services,
                                                                      screening, counseling, and referral services to ensure
  Ronald A. Tringali, PhD                                             that eligible, low-income individuals and families
  PA Department of Health, Bureau of Epidemiology                     seeking information about the occurrence, or risk of
  E-mail: rtringali@state.pa.us                                       occurrence, of a genetic condition or birth defect are
                                                                      provided. Supported vendors include: seven
                                                                      comprehensive genetic screening centers, three major
                                                                      metabolic screening and treatment centers, and four
                                                                      Family Health Councils.



 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects profile – Puerto Rico                                                                            January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Puerto Rico and US
                                                                                                                ‡
                                                              Puerto Rico                                    US
                                                  Average annual           Birth            Average annual             Birth
Defects                                            no. of cases         prevalence*          no. of cases           prevalence*
Central nervous system
                                                            †
 Anencephalus                                          16                   3.18                 1,009                  2.51
                                                          †
 Spina bifida without anencephalus                     20                   3.85                 1,477                  3.68
Cardiovascular
                                                            §
 Transposition of great arteries                       14                   2.73                 1,901                  4.73
                                                          §
 Tetralogy of Fallot                                   19                   3.72                 1,574                  3.92
                                                          §
 Atrioventricular septal defect (also known            19                   3.77                 1,748                  4.36
    as endocardial cushion defect)
                                                            §
 Hypoplastic left heart syndrome                       11                   2.13                   975                  2.43
Orofacial
                                                            †
 Cleft lip with and without cleft palate               44                  8.73                  4,209                 10.47
                                                          †
 Cleft palate without cleft lip                        30                  5.94                  2,567                  6.39
Musculoskeletal
                                                            †
 Upper limb defect                                     10                   1.97                 1,521                  3.79
                                                          †
 Lower limb defect                                      7                   1.38                  763                   1.90
                                                          †
 Gastroschisis                                         19                   3.74                 1,497                  3.73
Chromosomal
                                                            †
 Down syndrome                                         65                  12.78                 5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
§
  estimates based on pooled data from birth years 2003-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Puerto Rico’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       The Puerto Rico Birth Defects Surveillance System
    unknown.                                                          (BDSS) was established in 1995. It is an active,
 • Many birth defects happen during early pregnancy,                  population based, surveillance system for 44 birth
    often before a woman knows she is pregnant.                       defects. The program has a current legislation enacted
 • Addressing health risks and behaviors before                       in September 2004. The BDSS also has a Birth Defects
    pregnancy can reduce the risk of poor birth                       Prevention Campaign which also partners with other
    outcomes, including some birth defects.                           Agencies to promote birth defects prevention
 • All women who could become pregnant should take                    messages Island wide.
    400 micrograms of folic acid every day to help
    prevent serious defects of the baby’s brain and
    spinal cord.

  Program information:
  Diana Valencia, MSc.
  Puerto Rico Birth Defects Surveillance System                       How birth defects data are used in Puerto Rico
  E-mail: dvalencia@salud.gov.pr                                      BDSS data is monitored to identify time trends, and to
                                                                      detect changes in the occurrence of birth defects. An
  Laureane Alvelo-Maldonado, MSc.                                     annual basis data book is prepared and distributed to
  Puerto Rico Birth Defects Surveillance System                       health professionals interested in the field. The BDSS
  E-mail: lalvelo@salud.gov.pr
                                                                      provides referrals to programs and health services for
                                                                      at risk children. These data also serve to evaluate the
  We site: http://www.salud.gov.pr                                    impact of the Birth Defects Prevention Campaign.


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Rhode Island                                                                     January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Rhode Island and US
                                                                         †                                      ‡
                                                             Rhode Island                                    US
                                                    Annual no.             Birth               Annual no.              Birth
Defects                                              of cases           prevalence*             of cases            prevalence*
Central nervous system
 Anencephalus                                              0                 0.00                1,009                  2.51
 Spina bifida without anencephalus                         1                 0.84                1,477                  3.68
Cardiovascular
 Transposition of great arteries                           5                 4.18                1,901                  4.73
 Tetralogy of Fallot                                       5                 4.18                1,574                  3.92
 Atrioventricular septal defect (also known                4                 3.34                1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                           0                 0.00                  975                  2.43
Orofacial
 Cleft lip with and without cleft palate                   9                 7.53                4,209                 10.47
 Cleft palate without cleft lip                            5                 4.18                2,567                  6.39
Musculoskeletal
 Upper limb defect                                         1                 0.84                1,521                  3.79
 Lower limb defect                                         0                 0.00                 763                   1.90
 Gastroschisis                                             6                 5.02                1,497                  3.73
Chromosomal
 Down syndrome                                         12                    10.03               5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth year 2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Rhode Island’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       The Rhode Island Birth Defects Program (RIBDP)
    unknown.                                                          describes the occurrence of birth defects in children up
 • Many birth defects happen during early pregnancy,                  to age five; detects trends of morbidity and mortality;
    often before a woman knows she is pregnant.                       and helps assure children with birth defects receive
 • Addressing health risks and behaviors before                       services and treatment on a timely basis. Housed
    pregnancy can reduce the risk of poor birth                       within the Rhode Island Department of Health’s Center
    outcomes, including some birth defects.                           for Health Data and Analysis, the RIBDP collects data
 • All women who could become pregnant should take                    and service information from multiple sources including
    400 micrograms of folic acid every day to help                    hospital discharge data, specialty clinics, and primary
    prevent serious defects of the baby’s brain and                   care providers.
    spinal cord.
                                                                      How birth defects data are used in Rhode Island
  Program information:                                                Data collected by the RIBDP are utilized to determine
                                                                      the prevalence of birth defects and to identify trends
  Samara Viner-Brown, MS
  Rhode Island Birth Defects Surveillance Program
                                                                      related to specific conditions, maternal and/or child
  E-mail: Samara.Viner-Brown@health.ri.gov                            demographics, and other factors. Case ascertainment
                                                                      data are linked to Rhode Island’s integrated child health
  William Arias, MPH                                                  information system, KIDSNET, to identify whether
  Rhode Island Birth Defects Surveillance Program                     children have received preventive and other
  E-mail: william.arias@health.ri.gov                                 appropriate services. The RIBDP works closely with
                                                                      pediatric practices and parent consultants to determine
  Website:                                                            whether families of children with birth defects receive
  http://www.health.ri.gov/family/birthdefects/index.php              appropriate services and program referrals.

 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – South Carolina                                                                   January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, South Carolina and US
                                                                          †                                     ‡
                                                            South Carolina                                   US
                                                    Annual no.             Birth               Annual no.              Birth
Defects                                              of cases           prevalence*             of cases            prevalence*
Central nervous system
 Anencephalus                                           17                    2.73               1,009                  2.51
 Spina bifida without anencephalus                      19                    3.06               1,477                  3.68
Cardiovascular
 Transposition of great arteries                        --                     --                1,901                  4.73
 Tetralogy of Fallot                                    --                     --                1,574                  3.92
 Atrioventricular septal defect (also known             --                     --                1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        --                     --                  975                  2.43
Orofacial
 Cleft lip with and without cleft palate                --                     --                4,209                 10.47
 Cleft palate without cleft lip                         --                     --                2,567                  6.39
Musculoskeletal
 Upper limb defect                                      --                     --                1,521                  3.79
 Lower limb defect                                      --                     --                 763                   1.90
 Gastroschisis                                          --                     --                1,497                  3.73
Chromosomal
 Down syndrome                                          --                     --                5,132                 12.78
* per 10,000 live births
†
  estimates based on data from birth year 2006                      * Data reported is from Greenwood Genetic Center, prior to
‡
  estimates based on pooled data from birth years 1999-2001                SC Birth Defects Program start-up in 2006.
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             South Carolina’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       The SC Birth Defects Program began in July 2006 after
    unknown.                                                          passage of the SC Birth Defects Act which mandated
 • Many birth defects happen during early pregnancy,                  active surveillance of major structural birth defects
    often before a woman knows she is pregnant.                       identified prenatally through age two. Birth defects
 • Addressing health risks and behaviors before                       monitoring was transitioned from Greenwood Genetic
    pregnancy can reduce the risk of poor birth                       Center to SC Department of Health & Environmental
    outcomes, including some birth defects.                           Control. In the first 1 ½ years central nervous system,
 • All women who could become pregnant should take                    cardiovascular, musculoskeletal and orofacial defects
    400 micrograms of folic acid every day to help                    were monitored. In January 2008 all birth defects
    prevent serious defects of the baby’s brain and                   recommended by the CDC/NBDPN were added for
    spinal cord.                                                      surveillance. Nurse Abstractors collect comprehensive
                                                                      data on mother and infant from inpatient facilities
  Program information:                                                statewide. Data is collected in a web-based electronic
                                                                      data system that is integrated with the state’s vital
  Kirk Shull, BS                                                      record system. The program is guided by the SC Birth
  South Carolina Birth Defects Program                                Defects Advisory Council.
  E-mail: shullka@dhec.sc.go                                          How birth defects data are used in South Carolina
                                                                      To determine rates and trends of birth defects; to
                                                                      promote effective referral of infants/families for
                                                                      appropriate services; to develop public health
                                                                      strategies for prevention of birth defects; to conduct
                                                                      research on the causes, distribution and prevention of
                                                                      birth defects.

 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – South Dakota                                                                     January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, South Dakota and US
                                                                                                                ‡
                                                             South Dakota                                    US
                                                    Annual no.            Birth                Annual no.              Birth
Defects                                              of cases          prevalence*              of cases            prevalence*
Central nervous system
 Anencephalus                                           --                   --                  1,009                  2.51
 Spina bifida without anencephalus                      --                   --                  1,477                  3.68
Cardiovascular
 Transposition of great arteries                        --                   --                  1,901                  4.73
 Tetralogy of Fallot                                    --                   --                  1,574                  3.92
 Atrioventricular septal defect (also known             --                   --                  1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        --                   --                    975                  2.43
Orofacial
 Cleft lip with and without cleft palate                --                   --                  4,209                 10.47
 Cleft palate without cleft lip                         --                   --                  2,567                  6.39
Musculoskeletal
 Upper limb defect                                      --                   --                  1,521                  3.79
 Lower limb defect                                      --                   --                   763                   1.90
 Gastroschisis                                          --                   --                  1,497                  3.73
Chromosomal
 Down syndrome                                          --                   --                  5,132                 12.78
* per 10,000 live births
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             South Dakota’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       South Dakota does not have a birth defects registry at
    unknown.                                                          this time.
 • Many birth defects happen during early pregnancy,
    often before a woman knows she is pregnant.
 • Addressing health risks and behaviors before
    pregnancy can reduce the risk of poor birth
    outcomes, including some birth defects.
 • All women who could become pregnant should take
    400 micrograms of folic acid every day to help
    prevent serious defects of the baby’s brain and
    spinal cord.

  Program information:                                                How birth defects data are used in South Dakota

  Darlene Bergeleen
  SD Department of Health
  E-mail: darlene.bergeleen@state.sd.us




 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Tennessee                                                                        January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Tennessee and US
                                                                        †                                       ‡
                                                              Tennessee                                      US
                                                  Average annual          Birth             Average annual             Birth
Defects                                            no. of cases        prevalence*           no. of cases           prevalence*
Central nervous system
 Anencephalus                                           13                  1.57                 1,009                  2.51
 Spina bifida without anencephalus                      36                  4.45                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                        48                  5.92                 1,901                  4.73
 Tetralogy of Fallot                                    43                  5.30                 1,574                  3.92
 Atrioventricular septal defect (also known             30                  3.76                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        24                  3.04                   975                  2.43
Orofacial
 Cleft lip with and without cleft palate                88                  10.97                4,209                 10.47
 Cleft palate without cleft lip                         56                   6.94                2,567                  6.39
Musculoskeletal
 Upper limb defect                                      17                  2.12                 1,521                  3.79
 Lower limb defect                                      11                  1.34                  763                   1.90
 Gastroschisis                                          40                  5.00                 1,497                  3.73
Chromosomal
 Down syndrome                                         108                  13.44                5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Tennessee’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       The Tennessee Birth Defects Registry (TBDR) collects
    unknown.                                                          prevalence information for 44 birth defects by
 • Many birth defects happen during early pregnancy,                  abstracting data from the Hospital Discharge Data
    often before a woman knows she is pregnant.                       System (HDDS), and the Birth, Death and Fetal Death
 • Addressing health risks and behaviors before                       Statistical Data Systems. The TBDR also abstracts
    pregnancy can reduce the risk of poor birth                       individual medical records to assess the accuracy of
    outcomes, including some birth defects.                           the TBDR data system. This includes information for all
 • All women who could become pregnant should take                    of Tennessee’s 95 counties dating back to 1999. The
    400 micrograms of folic acid every day to help                    most recent year of available data is 2006. These
    prevent serious defects of the baby’s brain and                   activities are performed in accordance to state law TCA
    spinal cord.                                                      68-5-506.

  Program information:                                                How birth defects data are used in Tennessee
                                                                      TBDR data is used to provide annual information on
  David J. Law, Ph.D.                                                 birth defects prevalence and trends. These data also
  Tennessee Birth Defects Registry                                    provide the basis to identify possible associations
  E-mail: david.law@tn.gov                                            between birth defects and environmental hazards or
                                                                      other causes of birth defects, and to evaluate and guide
  John B. Daley, MS                                                   birth defect prevention initiatives. The TBDR has
  Tennessee Birth Defects Registry                                    shared information with public interest groups such as
  E-mail: john.daley@tn.gov
                                                                      the March of Dimes, Tennessee Perinatal Association,
                                                                      Tennessee Folic Acid Foundation, CDC and NBDPN.


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Texas                                                                            January 2010

About 1 out of every 33 babies is              Birth defects cause one in five             Birth defects lead to $2.6 billion
born with a major birth defect.                deaths among infants less than a            per year in hospital costs alone
                                               year old.                                   in the U.S.

Selected birth defects counts and birth prevalence, Texas and US
                                                                         †                                      ‡
                                                                 Texas                                       US
                                                   Average annual               Birth       Average annual             Birth
Defects                                             no. of cases             prevalence*     no. of cases           prevalence*
Central nervous system
 Anencephalus                                            92                     2.39             1,009                  2.51
 Spina bifida without anencephalus                      138                     3.59             1,477                  3.68
Cardiovascular
 Transposition of great arteries                        124                     3.22             1,901                  4.73
 Tetralogy of Fallot                                    144                     3.75             1,574                  3.92
  Atrioventricular septal defect (also known            158                     4.11             1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                         81                     2.12               975                  2.43
Orofacial
 Cleft lip with and without cleft palate                422                    11.01             4,209                 10.47
 Cleft palate without cleft lip                         217                     5.67             2,567                  6.39
Musculoskeletal
  Reduction deformity, upper limbs                      153                     4.00             1,521                  3.79
 Reduction deformity, lower limbs                        71                     1.86              763                   1.90
 Gastroschisis                                          181                     4.73             1,497                  3.73
Chromosomal
 Down syndrome                                          494                    12.89             5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.
 Preventing birth defects                                                Texas’s Birth Defects Surveillance System
 • The causes of about 70% of birth defects are                          The Texas Birth Defects Registry was established in
    unknown.                                                             1994 as the result of an unusual cluster of anencephaly
 • Many birth defects happen during early pregnancy,                     in Brownsville. Since then, Texas has maintained an
    often before a woman knows she is pregnant.                          active, population-based surveillance system, which
 • Addressing health risks and behaviors before                          became statewide in 1999. An active surveillance
    pregnancy can reduce the risk of poor birth                          approach, where staff routinely visit all hospitals to
    outcomes, including some birth defects.                              identify cases of birth defects, is considered the gold
 • All women who could become pregnant should take                       standard. More than 17,000 Texas babies are born
    400 micrograms of folic acid every day to prevent                    each year with one or more major structural
    serious defects of the baby’s brain and spinal cord.                 malformations. Birth defects are the second leading
                                                                         cause of infant deaths and the fourth leading cause of
                                                                         death among 1-14 year-olds in Texas.

  Program information:                                                   How birth defects data are used in Texas
                                                                         The Texas Birth Defects Registry monitors all births in
  Mark A. Canfield, PhD                                                  Texas (> 400,000 each year) to identify and describe
  Birth Defects Epidemiology and Surveillance Branch
                                                                         the patterns of birth defects in Texas. The Registry
  E-mail: Mark.Canfield@dshs.state.tx.us
                                                                         collaborates with researchers in finding causes of birth
  Lisa K. Marengo, MS                                                    defects and ultimately working towards prevention.
  Birth Defects Epidemiology and Surveillance Branch                     Children identified through the Registry are referred to
  E-mail: Lisa.Marengo@dshs.state.tx.us                                  appropriate services.

  Website: www.dshs.state.tx.us/birthdefects/


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Utah                                                                                 January 2010

About 1 out of every 33 babies is             Birth defects cause one in four                   Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a                  per year in hospital costs alone
                                              year old.                                         in the U.S.

Selected birth defects counts and birth prevalence, Utah and US
                                                                          †                                         ‡
                                                                   Utah                                           US
                                                  Average annual                  Birth          Average annual            Birth
Defects                                            no. of cases                prevalence*        no. of cases          prevalence*
Central nervous system
 Anencephalus                                          12                          2.32               1,009                2.51
 Spina bifida without anencephalus                     22                          4.40               1,477                3.68
Cardiovascular
 Transposition of great arteries                       15                          2.87               1,901                4.73
 Tetralogy of Fallot                                   19                          3.81               1,574                3.92
 Atrioventricular septal defect (also known            29                          5.62               1,748                4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                       18                          3.46                 975                2.43
Orofacial
 Cleft lip with and without cleft palate               68                        13.31                4,209               10.47
 Cleft palate without cleft lip                        37                         7.31                2,567                6.39
Musculoskeletal
 Upper limb defect                                     31                          6.01               1,521                3.79
 Lower limb defect                                      9                          1.85                763                 1.90
 Gastroschisis                                         27                          5.22               1,497                3.73
Chromosomal
 Down syndrome                                         78                         15.40               5,132               12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                                     Utah’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                               The Utah Birth Defect Network (UBDN) is a state wide
    unknown.                                                                  population based birth defect surveillance system.
 • Many birth defects happen during early pregnancy,                          The UBDN began by monitoring neural tube defects in
    often before a woman knows she is pregnant.                               1994. Select defects were added each year until all
 • Addressing health risks and behaviors before                               major structural malformations were being tracked in
    pregnancy can reduce the risk of poor birth                               1999. Multiple sources of ascertainment are
    outcomes, including some birth defects.                                   maintained to insure accuracy and completeness of
 • All women who could become pregnant should take                            data.
    a multivitamin that contains 400 micrograms of folic
    acid every day to help prevent serious defects of
    the baby’s brain and spinal cord.                                         How birth defects data are used in Utah
                                                                              The UBDN has monitored over 650,000 births. Data
  Program information:                                                        has been collected on over 11,000 children born in
                                                                              Utah with major structural birth defects. These data are
  Miland Ned Palmer, MPH, RHIA                                                used to: detect and respond to reported birth defect
  Utah Birth Defect Network                                                   clusters in Utah; identify potential risk factors; plan,
  E-mail: mpalmer@utah.gov                                                    establish and evaluate primary prevention activities;
                                                                              and to identify potential participants for specific birth
  Marcia Lynn Feldkamp, PhD, PA, MSPH                                         defect studies. The UBDN also provides information to
  Utah Birth Defect Network                                                   concerned parents and their healthcare providers
  E-mail: marcia.feldkamp@hsc.utah.edu
                                                                              regarding their child’s birth defect.



 National Birth Defects Prevention Network                                                                         www.nbdpn.org
Birth defects state profile – Virginia                                                                         January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Virginia and US
                                                                      †                                         ‡
                                                                Virginia                                     US
                                                  Average annual            Birth           Average annual             Birth
Defects                                            no. of cases          prevalence*         no. of cases           prevalence*
Central nervous system
 Anencephalus                                            4                  0.39                 1,009                  2.51
 Spina bifida without anencephalus                      42                  4.06                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                        59                  5.75                 1,901                  4.73
 Tetralogy of Fallot                                    51                  4.92                 1,574                  3.92
 Atrioventricular septal defect (also known             48                  4.68                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        29                  2.78                   975                  2.43
Orofacial
 Cleft lip with and without cleft palate               108                10.53                  4,209                 10.47
 Cleft palate without cleft lip                         82                 7.97                  2,567                  6.39
Musculoskeletal
 Upper limb defect                                      22                  2.10                 1,521                  3.79
 Lower limb defect                                      16                  1.52                  763                   1.90
 Gastroschisis                                          --                   --                  1,497                  3.73
Chromosomal
 Down syndrome                                         140                 13.62                 5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Virginia’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       Virginia Congenital Anomaly Reporting and Education
    unknown.                                                          System (VaCARES) has collected state-wide birth
 • Many birth defects happen during early pregnancy,                  defect data since 1987. VaCARES is a Web-based
    often before a woman knows she is pregnant.                       system that identifies more than 4,000 Virginia infants
 • Addressing health risks and behaviors before                       born with birth defects each year. In addition to birth
    pregnancy can reduce the risk of poor birth                       defect data collected from birthing, pediatric, and
    outcomes, including some birth defects.                           tertiary care hospitals, VaCARES also ascertains cases
 • All women who could become pregnant should take                    from the 3 regional genetic centers. System
    400 micrograms of folic acid every day to help                    improvements scheduled for completion in calendar
    prevent serious defects of the baby’s brain and                   year 2010 will support VaCARES within the same
    spinal cord.                                                      system as the Electronic Birth Certificate. This linkage
                                                                      ensures more comprehensive reporting of affected
  Program information:                                                children.

  Nancy C. Ford, MPH, RN                                              How birth defects data are used in Virginia
  Virginia Congenital Anomalies Reporting & Education System          Data are used to provide routine statistical monitoring,
  E-mail: nancy.ford@vdh.virginia.gov                                 public health program evaluation, baseline rates, rates
                                                                      by demographic and other variables, as well as other
                                                                      data–related activities. VaCARES data are also used
                                                                      to provide families with defect–specific educational
                                                                      material– and service–related resource information for
                                                                      children and families affected by birth defects.


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile –Vermont                                                                           January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Vermont and US
                                                                                                                ‡
                                                                 Vermont                                     US
                                                    Annual no.                Birth            Annual no.              Birth
Defects                                              of cases              prevalence*          of cases            prevalence*
Central nervous system
 Anencephalus                                           --                     --                1,009                  2.51
 Spina bifida without anencephalus                      --                     --                1,477                  3.68
Cardiovascular
 Transposition of great arteries                        --                     --                1,901                  4.73
 Tetralogy of Fallot                                    --                     --                1,574                  3.92
 Atrioventricular septal defect (also known             --                     --                1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        --                     --                  975                  2.43
Orofacial
 Cleft lip with and without cleft palate                --                     --                4,209                 10.47
 Cleft palate without cleft lip                         --                     --                2,567                  6.39
Musculoskeletal
 Upper limb defect                                      --                     --                1,521                  3.79
 Lower limb defect                                      --                     --                 763                   1.90
 Gastroschisis                                          --                     --                1,497                  3.73
Chromosomal
 Down syndrome                                          --                     --                5,132                 12.78
* per 10,000 live births
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                              Vermont’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are
    unknown.                                                           Vermont’s Birth Information Network began data
 • Many birth defects happen during early pregnancy,                   collection with 2006 births. In early 2010 information
    often before a woman knows she is pregnant.                        based on three years of data will be pooled to provide
 • Addressing health risks and behaviors before                        Vermont-specific prevalence rates.
    pregnancy can reduce the risk of poor birth
    outcomes, including some birth defects.
 • All women who could become pregnant should take
    400 micrograms of folic acid every day to help
    prevent serious defects of the baby’s brain and                    How birth defects data are used in Vermont
    spinal cord.
                                                                       The Vermont Birth Information Network provides
  Program information:                                                 referrals to families of infants with birth defects. The
                                                                       data will also be used to provide accurate counts of
  Peggy Brozicevic                                                     children with birth defects to ensure that adequate
  Birth Information Network (BIN)                                      services are available; to find ways to prevent or
  E-mail: pbrozic@vdh.state.vt.us                                      reduce the impact of birth defects; to improve overall
                                                                       health services; to evaluate prevention activities; and to
  John Burley                                                          document possible links between environmental and
  Birth Information Network (BIN)
                                                                       chemical exposure with birth defects of Vermont’s
  E-mail: jburley@vdh.state.vt.us
                                                                       infants and children.



 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – West Virginia                                                                    January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, West Virginia and US
                                                                         †                                      ‡
                                                             West Virginia                                   US
                                                  Average annual            Birth           Average annual             Birth
Defects                                            no. of cases          prevalence*         no. of cases           prevalence*
Central nervous system
 Anencephalus                                            2                   1.08                1,009                  2.51
 Spina bifida without anencephalus                       7                   3.56                1,477                  3.68
Cardiovascular
 Transposition of great arteries                         6                   3.12                1,901                  4.73
 Tetralogy of Fallot                                     6                   3.02                1,574                  3.92
 Atrioventricular septal defect (also known              4                   2.26                1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                         3                   1.51                  975                  2.43
Orofacial
 Cleft lip with and without cleft palate                 5                   2.59                4,209                 10.47
 Cleft palate without cleft lip                          8                   4.52                2,567                  6.39
Musculoskeletal
 Upper limb defect                                       1                   0.65                1,521                  3.79
 Lower limb defect                                       1                   0.43                 763                   1.90
 Gastroschisis                                          --                    --                 1,497                  3.73
Chromosomal
 Down syndrome                                          17                   8.94                5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             West Virginia’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are
    unknown.                                                          West Virginia birth defects system is a passive system
 • Many birth defects happen during early pregnancy,                  housed within the Office of Maternal, Child and Family
    often before a woman knows she is pregnant.                       Health of the Bureau for Public Health in the
 • Addressing health risks and behaviors before                       Department of Health and Human Resources. The
    pregnancy can reduce the risk of poor birth                       system collects birth defects data from all birthing
    outcomes, including some birth defects.                           facilities across the state and monitors the prevalence.
 • All women who could become pregnant should take
    400 micrograms of folic acid every day to help                    How birth defects data are used in West Virginia
    prevent serious defects of the baby’s brain and
    spinal cord.                                                      West Virginia birth defects data are used to detect
                                                                      trends and patterns in the occurrence of birth defects in
  Program information:                                                the state. These data are used for research, evaluation
  West Virginia Birth Defects Surveillance System Congenital          and prevention activities. WV CARESS also partners
  Abnormalities Registry, Education and Surveillance System           with Children Special Health Care Needs Systems
                                                                      Point of Entry, also housed in the Office of Maternal,
  Kathryn G. Cummons, MSW                                             Child and Family Health, to ensure parents of infants
  E-mail: Kathy.g.cummons@wv.gov                                      identified with birth defects are aware of services
                                                                      available to them and their families.
  Melissa A. Baker, MA
  E-mail: Melissa.a.baker@wv.gov

  Website: http://www.wvdhhr.org/caress/


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Wisconsin                                                                        January 2010

About 1 out of every 33 babies is             Birth defects cause one in five              Birth defects lead to $2.6 billion
born with a major birth defect.               deaths among infants less than a             per year in hospital costs alone
                                              year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Wisconsin and US
                                                                        †                                       ‡
                                                              Wisconsin                                      US
                                                  Average annual           Birth            Average annual             Birth
Defects                                            no. of cases         prevalence*          no. of cases           prevalence*
Central nervous system
 Anencephalus                                           10                  1.53                 1,009                  2.51
 Spina bifida without anencephalus                      16                  2.35                 1,477                  3.68
Cardiovascular
 Transposition of great arteries                        11                  1.59                 1,901                  4.73
 Tetralogy of Fallot                                    13                  1.95                 1,574                  3.92
 Atrioventricular septal defect (also known              9                  1.35                 1,748                  4.36
    as endocardial cushion defect)
 Hypoplastic left heart syndrome                        9                   1.41                   975                  2.43
Orofacial
 Cleft lip with and without cleft palate                64                  9.59                 4,209                 10.47
 Cleft palate without cleft lip                         41                  6.16                 2,567                  6.39
Musculoskeletal
 Upper limb defect                                      18                  2.74                 1,521                  3.79
 Lower limb defect                                       8                  1.17                  763                   1.90
 Gastroschisis                                          45                  6.73                 1,497                  3.73
Chromosomal
 Down syndrome                                          76                  11.40                5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2002-2006
‡
  estimates based on pooled data from birth years 1999-2001
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects                                             Wisconsin’s Birth Defect Surveillance System
 • The causes of about 70% of birth defects are                       Wisconsin has operated a passive registry, the
    unknown.                                                          Wisconsin Birth Defects Registry (WBDR), housed in
 • Many birth defects happen during early pregnancy,                  the Maternal and Child Health section in the Division of
    often before a woman knows she is pregnant.                       Public Health, since 2003 following passage of
 • Addressing health risks and behaviors before                       legislation and administrative rules requiring the
    pregnancy can reduce the risk of poor birth                       establishment of a registry and an advisory council.
    outcomes, including some birth defects.                           The WBDR is a secure web-based system that allows
 • All women who could become pregnant should take                    for both entry of an individual report and uploading of
    400 micrograms of folic acid every day to help                    multiple reports from an electronic patient records
    prevent serious defects of the baby’s brain and                   system. The WBDR also accepts paper reports.
    spinal cord.                                                      Wisconsin leads one or more prevention projects each
                                                                      year and partially funds a stillbirth project that reports
  Program information:                                                identified birth defects to the WBDR.

  Elizabeth Oftedahl, MPH                                             How birth defects data are used in Wisconsin
  Wisconsin Birth Defects Registry                                    Wisconsin has about 72,000 births a year. Birth
  E-mail: Elizabeth.Oftedahl@dhs.wisconsin.gov                        certificate data is used for comparison purposes and for
                                                                      outreach to underreporting areas. Researchers also
  Peggy Helm-Quest, MSEd, MHA, CHES                                   request and receive WBDR data for research purposes
  Wisconsin Birth Defects Registry                                    most recently on cleft lip/palate. Five Regional Centers
  E-mail: Peggy.HelmQuest@dhs.wisconsin.gov
                                                                      for CYSHCN use birth defects data for outreach to
  Website: https://wbdr.han.wisc.edu/index.html                       families and referral and follow-up activities.


 National Birth Defects Prevention Network                                                                      www.nbdpn.org
Birth defects state profile – Wyoming                                                                          January 2010

Approximately 1 baby out of                   Birth defects cause one in five              Birth defects lead to $2.6 billion
every 216 is born with a major                deaths among infants less than a             per year in hospital costs alone
birth defect in Wyoming.                      year old.                                    in the U.S.

Selected birth defects counts and birth prevalence, Wyoming and US
                                                                       †                                        ‡
                                                               Wyoming                                       US
                                                  Average annual          Birth             Average annual             Birth
Defects                                            no. of cases        prevalence*           no. of cases           prevalence*
Central nervous system
 Anencephalus                                           2                   0.60                 1,009                  2.51
 Spina bifida without anencephalus                     10                   2.99                 1,477                  3.68
Cardiovascular
                                 §
 Transposition of great arteries                        --                   --                  1,901                  4.73
                     §
 Tetralogy of Fallot                                    --                   --                  1,574                  3.92
                               §
 Atrioventricular septal defect (also known             --                   --                  1,748                  4.36
    as endocardial cushion defect)
                                     §
 Hypoplastic left heart syndrome                        --                   --                    975                  2.43
Orofacial
                                         §
 Cleft lip with and without cleft palate               --                    --                  4,209                 10.47
                                §
 Cleft palate without cleft lip                        --                    --                  2,567                  6.39
 Cleft lip/palate                                      48                  14.37                   --                    --
Musculoskeletal
 Upper limb defect                                     20                   5.99                 1,521                  3.79
 Lower limb defect                                     41                  12.28                  763                   1.90
 Gastroschisis                                          9                   2.69                 1,497                  3.73
Chromosomal
 Down syndrome                                         18                   5.39                 5,132                 12.78
* per 10,000 live births
†
  estimates based on pooled data from birth years 2001-2005
‡
  estimates based on pooled data from birth years 1999-2001
§
  data not collected to this level of specificity
-- No data available
Note: Due to variability in the methods used by state birth defects surveillance systems and differences in populations and risk
factors, state prevalence estimates may not be directly comparable with national estimates or those of other states.

 Preventing birth defects
 • The causes of about 70% of birth defects are                       Wyoming’s Birth Defect Surveillance System
    unknown.
 • Many birth defects happen during early pregnancy,                  Currently the state of Wyoming does not perform birth
    often before a woman knows she is pregnant.                       defects surveillance. In 2010 the Wyoming Health
 • Addressing health risks and behaviors before                       Department, Community and Public Health Division will
    pregnancy can reduce the risk of poor birth                       be developing a statewide plan for birth defects
    outcomes, including some birth defects.                           surveillance. The statewide plan will establish a passive
 • All women who could become pregnant should take                    birth defects surveillance system to be initiated in 2011.
    400 micrograms of folic acid every day to help
    prevent serious defects of the baby’s brain and
    spinal cord.

  Program information:

  Angela Crotsenberg, MS.
  Wyoming Department of Health
  E-mail angi.crotsenberg@health.wyo.gov

  Christopher Hill, MPH, CPH
  Wyoming Department of Health
  E-mail christopher.hill1@health.wyo.gov



 National Birth Defects Prevention Network                                                                      www.nbdpn.org