Newborn Screening Training for Public Health Nurses 5 16 11

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					Public Health Nurse Training




         Maternal and Child Health
  Genomics and Newborn Screening Program
Introduction to Indiana’s Newborn
       Screening Program
Why Do Newborn Screening?


•   Required by Indiana law (Indiana Code 16-41-17)

•   Early detection & early treatment of newborn
    screening disorders:
    – Lessens severity of complications
    – Improves quality of life

•   Lack of early detection & treatment can lead to:
    – Severe mental retardation
    – Inadequate growth & development
    – Death
   Mission of ISDH Newborn
      Screening Program


• Ensure that every newborn in Indiana receives state-
  mandated screening for all 46 designated conditions

• Maintain a centralized program to ensure that infants
  who test positive for screened condition(s) receive
  appropriate diagnosis and treatment and that their
  parents receive genetic counseling

• Promote genetic services, public awareness, and
  education concerning genetic conditions
                         History of Newborn Screening
                                    in Indiana

•   1965: PKU only condition included in newborn screen

•   1978: Hypothyroidism added

•   1985: Galactosemia, homocystinuria, maple syrup urine disease (MSUD), and
    hemoglobinopathies added

•   1999: Biotinidase deficiency and congenital adrenal hyperplasia added

•   2003: Screening further expanded to include disorders detected by tandem mass
    spectrometry (MS/MS)
•
•   2007: Cystic fibrosis was added to the panel

•   Currently, all infants born in Indiana are screened for 46 conditions
    (including hearing loss)
 Indiana’s Newborn Screen

• Two parts:

  – Heel Stick Screening
     • Includes Sickle Cell Program & Cystic Fibrosis
       Program
     • Also includes follow-up for metabolic and endocrine
       conditions on newborn screening panel


  – Early Hearing Detection and Intervention
    (EHDI)
     • Includes Universal Newborn Hearing Screen
       Part I


Heel Stick Screening
               Heel Stick Screening

• Performed on a blood specimen taken
  from the heel of an infant shortly after birth

• Used to screen for certain genetic
  conditions
  – Metabolic conditions
  – Endocrine conditions
  – Cystic fibrosis
                 Tandem Mass Spectrometry (MS/MS)


• Analytical technique that separates & detects protein
  ions

• Enables newborn screening labs to quickly & efficiently
  detect many conditions in a single process through use
  of dried blood spot specimens

• Disorders detected by MS/MS:
   • Fatty acid oxidation disorders
       • Interfere with body’s ability to turn fat into energy
   • Organic acid disorders
       • Inability to break down certain amino acids & their metabolites
   • Other amino acid disorders (including tyrosinemia & urea cycle
     disorders)
                              Roles in the Heel Stick Process
          Entity                                                        Role(s)
                                   • Ensure that mandated NBS is properly conducted
           ISDH                    • Ensure that appropriate diagnosis & management of affected newborns occur
                                   • Designate & contract with state NBS laboratory
                                   • Screen all infants prior to discharge
                                   • Maintain NBS log
                                   • Notify parents to bring baby in for NBS if infant left hospital before NBS and
                                   parents did not sign religious waiver
                                   • Educate parents about the importance of NBS
                                   • Notify ISDH immediately if babies are discharged before receiving NBS
         Hospitals
                                   • Notify IU NBS lab if infants who need repeat screens cannot be contacted
                                   • Notify IU NBS lab and ISDH if changes in demographic information are
                                   identified
                                   • Notify parents if baby needs repeat NBS for any reason
                                   • Notify primary care providers (PCPs) of NBS results
                                   • Notify PCPs if baby does not return for repeat NBS
                                   • Alert parents about newborn screening
                                   • Collect a heel stick sample directly or refer family to appropriate
                                   physician/facility for heel stick collection
         Midwives                  • If family refuses NBS based on religious reasons, have parent(s) sign religious
                                   waiver & submit religious waiver to ISDH NBS Program
                                   • Notify ISDH NBS Program if an infant has not received a screen
                                   • Notify ISDH NBS Program within 3 days of receiving NBS results
                                   • Assist ISDH in locating parents of infants who were not screened, had invalid or
                                   abnormal screens, or require diagnostic testing
                                   • Educate parents about the importance of NBS and follow-up
Public Health Nurses (PHNs)
                                   • If parent(s) unable to get baby to hospital for repeat NBS, collect NBS
                                   specimens if trained & certified
PHN Request for Assistance Form
              Request for Assistance Form
• PHNs are responsible for documenting all follow-up activities
  on the “Request for Assistance” form

• Form should be returned to ISDH within 8 days and should
  document:
   –   Follow-up activities are completed
   –   Parents fail to bring child in for initial or repeat NBS
   –   PHN is unable to contact parents
   –   Identified changes to demographic information

• The “Request for Assistance” Form should be returned to:
   – Courtney Eddy, INSTEP Director, via:
        • Fax: (317) 234-2995
        • Certified (secure) e-mail only (CEddy@isdh.IN.gov)
             – Note: PHNs who need to set up a certified e-mail account should notify ISDH
               for assistance.
                       REQUEST FOR ASSISTANCE Form (example)

Date: April 26, 2012                                               County: Everywhere

Please advise the parent(s) of the infant named below that a repeat test or initial test for newborn screening is
necessary. This can be done at the hospital of birth or any other facility that has the heel-stick test kit. The
hospital of birth is preferable as generally there is no additional charge for a rescreen. If the parents have any
questions regarding this request, they may contact the Newborn Screening Program at the Indiana State
Department of Health, (317) 233-1379.

Reason:          Early Discharge ______                              <24 Hours Protein Intake ______
                 Poor Sample     ______                              Transferred before Screen ______
                 Abnormal Result ___X___                             Other: Decreased T4

Infant's Name: Dahl, Ken                                              D.O.B: 2/14/2007        SEX: M

Birthing Institution: Meridian Hospital

Hospital Number: 123456

Mother's Name: Dahl, Mary                                    Doctor’s Name:      Marcus Welby

Address: 234 Center Drive                                    Doctor’s Address: ABC Street
         Anytown, IN 46302                                                     Anytown, IN 46302


Telephone: 517-789-1011                                      Doctor’s Phone:     517-245-6789
                    REQUEST FOR ASSISTANCE Form (example)

                                                       INCOMPLETE – PHN did not record
                                                      date/location of repeat NBS. This form
Need Follow-up report returned by: 5/9/2007
                                                        should not be returned to ISDH until
PHN Contacts:                                            missing documentation is added.
Telephone Call:   Yes ___X__ No _____              Home Visit:   Yes _____ No _____

Date                   Remarks
1) 05 / 01 / 2007       Phone call to Mary: will take baby to hospital for repeat screen___________
2) _____/_____/_____   ______________________________________________________________
3) _____/_____/_____   ______________________________________________________________
4) _____/_____/_____   ______________________________________________________________
5) _____/_____/_____   ______________________________________________________________

No Such Address: __________
Will Obtain Screen At: __________________________________________________
Public Health Nurse: _Vickie Nurse, R N    Telephone: 517-456-2345

                           USE BACK OF FORM FOR ADDITIONAL REMARKS


PLEASE RETURN THIS FORM TO:
                         INDIANA STATE DEPARTMENT OF HEALTH
                          NEWBORN SCREENING PROGRAM / MCH
                                   2 NORTH MERIDIAN
                                       SUITE 700
                                INDIANAPOLIS, IN 46204
                     REQUEST FOR ASSISTANCE Form (example)
                                                      COMPLETE – Includes documentation of all
Need Follow-up report returned by: 5/9/2007           PHN activities, as well as date & location of
PHN Contacts:                                                         repeat NBS.
Telephone Call:        Yes ___X__ No _____       Home Visit:        Yes _X___ No _____

Date                      Remarks
1) 05/01/2007 Phone call to mom: got voicemail; left message to call Vickie, PHN at Everywhere
              Health Department, phone #-_456-2345
2) 05/02/2007 No return call from mom: made 2nd call to mom; left message for mom to call Vickie, PHN
3) 05/04/2007 No return call from mom: sent letter to mom re: the need for baby to have a repeat newborn screen
4) 05/07/2007 Still no response from mom: made home visit; spoke with mom and explained the importance of
              the baby having a repeat NBS for further evaluation. Mom said she will take baby back to birthing
              hospital tomorrow.
5) 05/08/2007 Received call from mom who said she took baby back for re-screen today at 9:00 am.

No Such Address: ____________________________________________
Will Obtain Screen At: Meridian Hospital on 05/08/07 at 9:00am
Public Health Nurse: _Vickie Nurse, R N         Telephone: 517-456-2345

                            USE BACK OF FORM FOR ADDITIONAL REMARKS


PLEASE RETURN THIS FORM TO:
                         INDIANA STATE DEPARTMENT OF HEALTH
                          NEWBORN SCREENING PROGRAM / MCH
                                   2 NORTH MERIDIAN
                                       SUITE 700
                                INDIANAPOLIS, IN 46204
                  Heel Stick Procedure



• NOTE: The following procedures are modified from the heel stick
  procedures slides provided by the New York State Department of Health
              Collecting Heel Stick Specimen


•   If parent(s) / guardian(s) are unable to get
    the baby back to the hospital for the
    repeat screen, PHNs can collect NBS
    specimen, if trained and certified

•   Trained & certified PHNs are responsible
    for:
    – Proper collection of heel stick blood sample
    – Proper handling & transport of blood spot
      specimen to the IU NBS lab
                  Heel Stick Procedure
                         Step 1




• Equipment:
   – Sterile lancet with tip appropriately 2.0 mm - sterile alcohol prep
   – Sterile gauze pads
   – Soft cloth
   – Blood spot card
   – Gloves
Blood Spot Card (front)
Blood Spot Card (back)
                 Heel Stick Procedure
                        Step 2




• Complete ALL information on blood spot card.
  – Do not contaminate filter paper circles by allowing the
    circles to come into contact with spillage or by touching
    before or after blood collection.
             Heel Stick Procedure
                    Step 3



• Hatched areas
  (arrows) indicate
  safe areas for
  puncture site.
            Heel Stick Procedure
                   Step 4


• Warm site with soft
  cloth moistened with
  warm water (up to
     o
  41 C) for 3 – 5
  minutes.
           Heel Stick Procedure
                  Step 5


• Cleanse site
  with alcohol
  prep.

• Wipe DRY with
  sterile gauze
  pad.
             Heel Stick Procedure
                    Step 6

• Puncture heel.
  – Wipe away first blood
    drop with sterile
    gauze pad.
  – Allow another
    LARGE blood drop to
    form.
                     Heel Stick Procedure
                            Step 7
• Lightly touch filter paper to
  LARGE blood drop.

• Allow blood to soak through and
  completely fill circle with SINGLE
  application of LARGE blood drop.

• To enhance blood flow, VERY
  GENTLY apply intermittent
  pressure to area surrounding the
  puncture site).

• Apply blood to one side of filter
  paper only.
               Heel Stick Procedure
                      Step 8
• Fill remaining circles in
  the same manner as
  step 7, with successive
  blood drops.

• If blood flow is
  diminished, repeat
  steps 5 through 7.

• Provide care to the skin
  puncture site.
                Heel Stick Procedure
                       Step 9




• Dry blood spots on a dry, clean, flat, non-absorbent surface for a
  minimum of four (4) hours.
        Heel Stick Procedure
               Step 10




• Mail completed blood spot card to IU
  Newborn Screening Lab within 24
  hours of collection.
           Heel Stick Procedure


                    NOTE:

• Use of capillary tubes to collect heel stick
  specimens is NOT recommended or
  included as part of Indiana’s protocols
Valid vs. Invalid Blood Spot Specimens
Valid Heel Stick Specimens

•       A newborn screen is valid when:

    •     The child is at least 48 hours of age

    •     The child has been on protein feeding for at
          least 24 hours

    •     The NBS blood specimen is received by the
          NBS laboratory within 10 days of collection
      Valid Specimens

• Fill all required circles.

• Allow blood to soak through to other side of filter
  paper.

• Do not layer successive drops of blood.

• Avoid touching or smearing spots.
Invalid Specimens
     Specimen Quantity Insufficient for Testing




                             Possible causes

1.   Removing filter paper before blood has completely filled circle or
     before blood has soaked through to second side.

2.   Applying blood to filter paper with a capillary tube.

3.   Touching filter paper before/after blood specimen collection (with
     gloved/ungloved hands, lotion, powder, etc.)
 Specimen Appears Scratched/Abraded




                  Possible cause

1. Applying blood with capillary tube or other
   device.
     Specimen Not Dry Before Mailing




                 Possible cause

1. Mailing specimen without drying for at least
   four (4) hours.
Specimen Appears Clotted or Layered




                      Possible causes

1. Touching same circle on filter paper to blood drop
   numerous times.

2. Filling circle on both sides (front & back) of filter
   paper.
Possible Results of Newborn Screening
                        Results of NBS

• Normal
   – All values fall within normal range

• Invalid screen
   – Child does not meet criteria for valid screen
   – Specimen > 10 days old
   – QNS (quantity not sufficient)

• Abnormal result(s)
   – Result(s) fall outside of normal range
   – Additional testing may be required to confirm result(s)

• Presumptive positive result(s)
   – Suggests abnormal result(s)
   – Additional testing may be required to confirm result(s)
Confirmatory Testing
                    Confirmatory Testing - PHN
                         Responsibilities

• If confirmatory testing for NBS conditions is required:

   – PHN will receive requisition and name of lab that will
     perform the test
      • NOTE: Blood specimen can be drawn at birthing facility


   – PHN should provide the following information to ISDH
     NBS Program:
      • Name of hospital/birthing facility that will collect the specimen
      • Approximate date of collection
      • Name of laboratory performing confirmatory testing
Cost of Newborn Screening
             Cost – Initial & Repeat NBS


• Parents are billed for the initial newborn
  screen
  – Cost of initial NBS: $85.00 (effective July 1,
    2008)

• There is no charge for re-screens if baby
  receives repeat NBS at same hospital where
  baby born
                    Cost of Confirmatory Testing


•   Most insurance plans will pay for confirmatory
    testing

•   Medicaid will pay for confirmatory testing, if mother
    had Medicaid during pregnancy

•   If mother has no insurance coverage:
    –   She should immediately apply for Medicaid and take
        baby back for testing
        •   Medicaid will pay retroactively
              Cost of Confirmatory Testing
                         (cont.)


• Check with local hospitals or birthing facilities
  regarding payment options available to help
  family

• If assistance is still needed, contact:
   – Barb Lesko at IU Newborn Screening Laboratory
      • (800) 245-9137
   – Bob Bowman at ISDH
      • (888) 815-0006
Refusal of Newborn Screening
                 Refusal of NBS
• NOTE: Parents can legally refuse newborn
  screening (NBS) only due to religious reasons.

• If parents refuse NBS, PHN should:

  – Have parents complete religious waiver

  – Document refusal of NBS on “Request for Assistance”
    form

  – Send signed religious waiver & completed “Request for
    Assistance” form to ISDH NBS Program
       Part II

     Early Hearing
Detection & Intervention
        (EHDI)
   Early Hearing Detection and
       Intervention (EHDI)

• Three main components to the EHDI process:

  – Universal Newborn Hearing Screening (UNHS)

  – Diagnostic audiology assessment
     • For those infants who did not pass UNHS or have risk factors for
       hearing loss


  – Enrollment in early intervention services (First Steps
    and/or private intervention)
     • For those infants identified with permanent hearing loss
Why is Hearing Screening
       Mandated?
* Hearing loss is the condition most commonly
       detected at or shortly after birth *
40
35
30
25                               Hearing loss
                                 Down syndrome
20
                                 Spina bifida
15                               PKU
10
 5
 0
    Why is Hearing Screening
       Mandated? (cont.)


• Early identification & intervention help improve
  speech, language, social, & academic development

• Early intervention enables parents to make timely &
  informed decisions
         Goals of ISDH EHDI Program

• Increase the number of babies receiving UNHS

• Reduce number of infants for whom no screening
  data is received at ISDH

• Remember...
  – UNHS before 1 month of age
  – Diagnosis before 3 months of age
  – Early intervention before 6 months of age
                  Roles in the EHDI Process
       Entity                                               Role(s)
                       • Train & support hospital screening programs
                       • Track all babies referred for appropriate diagnosis & management
       ISDH            • Provide families with support


                       • Conduct Universal Newborn Hearing Screen (UNHS) for all newborns prior to
                       discharge
                       • Re-screen any infant who did not pass initial screening (UNHS) in one or both
                       ears
                       • Ensure that infants who are discharged without UNHS return before 1 month of
                       age for screen
Hospitals & Midwives   • Inform PCP about screening results
                       • If baby does not pass the re-screening, schedule follow-up diagnostic testing
                       prior to discharge
                       • Provide each family with UNHS results and copy of Hearing Screening
                       Results (See back of the Who, What, Why brochure)
                       • Report to ISDH all babies who 1) were not screened; 2) did not pass UNHS; or
                       3) passed UNHS, but had one or more risk factors for hearing loss
                       • Assist ISDH in locating families of infants lost to follow-up who 1) need an initial
                       hearing screen or re-screen, 2) need diagnostic assessment, and/or 3) need
                       follow-up due to risk for delayed-onset hearing loss
Public Health Nurses   • Educate families about importance of UNHS
       (PHNs)          • Ensure that parents who refuse NBS for religious reasons sign religious waiver
                       (return to ISDH)
                       • Assist ISDH in obtaining necessary follow-up services for families
UNHS Screening Techniques
  Screening Techniques –
          UNHS

• Automated auditory brainstem response (AABR)

• Oto-acoustic emissions (OAE)



** Note: Parents want confident, knowledgeable screeners. Some parents
 may wish to be with their child when UNHS is performed – this should be
                           offered when possible.
      Screening Techniques –
Auditory Brainstem Response (ABR)

• Sounds are presented
through earphones

• Surface electrodes
measure brainstem
activity in response to
sound

• Average test time: 20
min/baby
   Screening Techniques –
Oto-acoustic Emissions (OAE)


                • Sounds are presented
                to the ear canal
                • Small microphone
                measures the cochlear
                response in the ear canal
                • Average test time:
                5 – 15 min/baby
Possible Results of UNHS
     Possible Results - PASS

• Screeners should tell parents:

  – “Your baby’s hearing is adequate for the
    development of normal speech & language skills.”
  – “You should continue to monitor your child’s
    speech & language development.”
  – “Talk to your baby’s doctor if you are worried
    about your baby’s hearing or speech
    development.”
        Possible Results –
 DID NOT PASS (in one or both ears)

• Screeners should tell parents:
   –   “Your baby did not pass his/her hearing screen in one/both ears.”
   –   “This might have happened for several reasons.”
   –   “This does not mean that your baby has permanent hearing loss.”
   –   “Your baby needs a diagnostic hearing test, done by an audiologist, in
       order to determine how your baby hears.”
• Screeners should give parents a copy of “What If Your Baby
  Needs More Hearing Tests?”
• Words matter-Do not use words like “failed”
• Babies who do not pass UNHS should be:
   – Reported to ISDH EHDI Program
   – Scheduled for diagnostic testing at a Level 1 Audiology
   – Referred/Reported to the PCP
        Possible Results –
   PASS, but has RISK FACTORS
• Screeners should tell parents:
   – “Your baby passed his/her hearing screen in both ears, but has a risk
     factor.”
   – “Your baby’s risk factor is _____________.”
   – “This does not mean that your baby has permanent hearing loss.”
   – “Your baby should have diagnostic testing between 9 and 12 months
     of age, or sooner if there are concerns

• Screeners should give parents a copy of “What If Your Baby
  Needs More Hearing Tests?”

• Babies who have risk factors for hearing loss should be:
   – Reported to ISDH EHDI Program
   – Reported to their PCP for referral to a pediatric audiologist at 9-12
     months of age (earlier if there are immediate concerns)
Risk Factors
for Hearing
    Loss
   Family History of Congenital /
     Childhood Hearing Loss

• Includes family members with hearing loss in
  one/both ears since childhood
  – Can be due to known genetic cause or unknown cause

• Excludes history of middle ear infections and/or
  tubes

• Excludes family members with known, non-genetic
  causes of hearing loss
  –   Exposure to rubella
  –   Meningitis
  –   Exposure to loud noise
  –   Trauma
               In Utero Infection
• Includes conditions from TORCH screen

   – Toxoplasmosis
      • Most commonly affects babies whose mothers were exposed during 1st
        trimester
   – Other
      • Group beta strep (GBS)
      • Syphilis
          – Baby can be treated prior to delivery
   – Rubella
      • Most commonly affects babies when exposure occurs during 1st trimester
   – Cytomegalovirus (CMV)
      • Can be transmitted during pregnancy (placenta), during delivery (birth
        canal), or postnatally (breast milk)
   – Herpes Simplex Virus (HSV)
      • Most commonly affects babies whose mothers have active infection
        during delivery
        Hyperbilirubinemia



• Risk factor for hearing loss when bilirubin
  levels exceed indication for exchange
  transfusion
        Cranio-facial/Ear Malformations


• Babies who cannot be screened at the hospital due
  to no ear, partial ear, or no ear canal opening should
  be immediately referred to audiology and their
  physician for diagnostic testing

• Babies with craniofacial anomalies who pass the
  screen should be referred for follow-up at 9-12
  months of age
  Referrals for Infants with Risk
              Factors

• Babies with any of the previous 4 risk factors must
  be reported to the ISDH EHDI Program
  – These children should receive follow-up testing from an
    audiologist around 9-12 months of age

• Families should be:
  – Informed about which risk factor(s) was/were identified
  – Be provided with hearing & language developmental
    milestones
     • Told to monitor their child’s progress
  – Referred to ISDH & their PCP
  – Be informed of the importance of follow-up testing
                 Other Risk Factors
• Infants who have one of the following risk factors
  should be referred to their PCP:

  – Spent > 5 days in the Neonatal Intensive Care Unit (NICU)

  – Have a genetic condition or syndrome known to be
    associated with an increased risk for hearing loss

  – Have or had bacterial meningitis (infection around brain &
    spinal cord caused by bacteria)

  – Have a parent or caregiver who is concerned about the
    baby’s hearing and/or language development
Follow-up Services
      Services Provided for Referred
                 Infants
• Diagnostic audiologic testing to confirm hearing status
   – Should be performed at Level 1 Audiology Center
      • These locations have pediatric experience & equipment
        necessary to perform diagnostic testing
      • List of locations available on ISDH EHDI website

• Enrollment in early intervention services
   – For infants with confirmed hearing loss

• Appropriate follow-up
   – Includes appropriate amplification or treatment and follow-
     up intervention services
              Financial Coverage
          of EHDI Follow-up Services


– Medicaid & Children’s Special Health Care
  Services: Funding for diagnostic services can be
  obtained for families who qualify financially

– Private insurance: Some insurance companies
  will cover diagnostic audiology services. Families
  should contact their insurance carrier to
  determine covered services & identify providers.
             Roles in the EHDI Follow-Up Process
         Entity                                                  Role(s)
                            • Track & follow each infant referred to achieve national 1 – 3 – 6 goals
                            • Provide educational & technical assistance to birthing facilities, families,
          ISDH              audiologists, physicians, & early intervention providers
                            • Train EHDI Regional Consultants, Service Providers, Hospitals, Physicians


                            • Provide technical assistance, training, & consultations to hospitals, families, &
                            community agencies
EHDI Regional Consultants   • Serve as resource to ensure that children with hearing loss receive appropriate
                            & timely care




       First Steps          • Provide coordination of follow-up services for children with diagnosed hearing
                            loss



                            • Assist ISDH in locating families of infants lost to follow-up who 1) need an initial
                            hearing screen or re-screen, 2) need diagnostic assessment, and/or 3) need
  Public Health Nurses      follow-up due to risk for delayed-onset hearing loss
         (PHNs)             • Educate families about importance of UNHS
                            • Assist ISDH in obtaining necessary follow-up services for infants
         EHDI Regional Consultants

                               Phone
Region        Name
                               Number
           Valari Koziel &
  1                          (219) 933 – 2094
            Evelyn Sell
                             (765) 608 – 3277
           Sherry Hodge
  2         Jamie Beck       (260) 426-8117

  3       Michelle Escobar   (317) 733 – 2285


  4         Molly Pope       (317) 233 – 1264

          Julia Balbach &
  5                          (812) 479 – 1411
           Jayne Fields

  6         Jay Cherry       (812) 523 – 3323
 PHN Responsibilities –
EHDI Follow-Up Services
              Request for Assistance Form
• PHNs are responsible for documenting all EHDI follow-up
  activities on the “Request for Assistance” form

• Form should be returned to ISDH within 8 days, or when:
   –   Follow-up activities are completed
   –   Parents fail to bring child in for initial or repeat UNHS
   –   PHN is unable to contact parents
   –   Changes to demographic information are identified

• The “Request for Assistance” Form should be returned to
  Gayla Hutsell Guignard, ISDH EHDI Program Director via:
   – Fax: (317) 234-2995
   – Certified (secure) e-mail only (GHutsell@isdh.IN.gov)
        • Note: PHNs who need to set up a certified e-mail account should notify
          ISDH for assistance.
                        Reasons for Referral to PHN
      Referral                                          Follow-up Action
                         • May occur due to early discharge from birthing facility or equipment problems
                         • Refer infant back to birthing facility for UNHS.
 Not Screened (No
                         • Explain the NBS law & the importance of early identification of hearing loss
  Hearing Status)        • NOTE: Parents may have refused screening based on religious objections. Ensure
                         religious waiver completed & returned to ISDH.
                         • Follow-up testing recommended at 9 – 12 months of age
Passed, but with Risk    • Explain developmental milestones
      Factors            • Explain the importance of monitoring speech & language development
                         • Refer families to Level 1 Audiology Center and/or PCP for follow-up

                         • Find out if follow-up testing completed. Document location, date(s), and result(s) of
                         follow-up testing.
                         • If no follow-up testing performed, explain importance of follow-up testing to families
                         • Refer families to Level 1 Audiology Center and/or PCP for follow-up
 Did Not Pass UNHS       • If parents do not feel a problem exists, explain that mild or unilateral (one ear only)
                         loss may not be noticed, but could impact language development & educational
                         progress.
                         • If questions persist, contact ISDH or EHDI Regional Consultant.

                         • Try to locate family. Document all attempts to find family.
                         • If family located, discuss importance of hearing screen.
 Lost to Follow-Up       • NOTE: Babies older than 6 months will require diagnostic assessment. Refer family
                         to PCP and/or First Steps for follow-up.
                         • If unable to locate, complete “Request for Assistance” form & return to ISDH.
        How is Indiana Doing?




2009 Outcome Statistics for Heel Stick &
          Hearing Screening
                  2009 Heel Stick Screening
                         Statistics
• Approximately 89,000 births in Indiana

  – 98.2% of infants received initial newborn screens

  – 81 infants were confirmed to have a metabolic disorder
  – 47 infants were confirmed to have an endocrine disorder

  – 26 infants were confirmed to have a hemoglobinopathy

  – 26 infants were confirmed to have cystic fibrosis

  – 100% of infants with confirmed cases received treatment and
    follow-up
  2009 Indiana Hearing Screening Statistics

• Approximately 89,000 births

• 103 birthing facilities reported
   • 98.7% of babies were screened

   • 2.3% were referred for diagnostic audiology evaluations
      • 81.3% had normal hearing results
      • 6.2% (124 children) were diagnosed with permanent hearing loss
      • 7.4% were lost to follow-up/documentation


   • Additional 30 babies who were born in 2009 were
     identified with hearing loss in 2009

   • Additional 67 babies who were born before 2009 were
     identified with hearing loss in 2009
      2009 Indiana Diagnostic Statistics

• 87.6% of children born in 2009 received follow-up
  – 0.6% of these children have been evaluated but need
    additional testing
  – 1.4% moved out of state
  – 0.5% are deceased
  – 2.5% had families who declined follow-up
  – 7.4% LTF/D


• Mean age of first evaluation: ~ 3 months (88.2 days)
  – Median age of first evaluation: ~ 2 months (56 days)


• Mean age of diagnosis: ~ 3 months (93.7 days)
  – Median age of diagnosis: ~ 2 months (58 days)
    Contact Information for ISDH
    Newborn Screening Program
• Director of Genomics and Newborn Screening
   • Bob Bowman

• Heel-Stick Program
   –   INSTEP Director – Courtney Eddy
   –   Sickle Cell Program Director – Lisa Mani
   –   Genomics & Cystic Fibrosis Programs Director – Malorie Hensley
   –   Newborn Screening Data Quality Specialist – Iris Stone

• Early Hearing Detection and Intervention (EHDI) Program
   –   State EHDI Director – Gayla Hutsell Guignard
   –   EHDI Follow-Up Coordinator- Julie Schulte
   –   UNHS Nurse Consultant – Bess Godard
   –   Lead Audiology Regional Consultant – Molly Pope
   –   Guide By Your Side Program Coordinator- Lisa Kovacs
   –   EHDI Parent Consultant – Julie Swaim

• To contact the ISDH Newborn Screening Program:
   – Call (888) 815-0006
   – Visit the ISDH Newborn Screening website at http://www.NBS.IN.gov
      Public health nurses                      Primary care physicians
                                                   & other health care
                                                        providers




                                 Newborn
Hospitals & hospital            Screening:                   ISDH
    personnel
                             It takes a team!



            IU Newborn                        Early intervention
        Screening Laboratory                providers (First Steps)

				
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