The Challenges of Preterm BirthBeyond the ... - Hand to Hold-ag by yaofenjin


									                                                                                        Generational HealtH

The Challenges of Preterm Birth: Beyond the Hospital Doors
A Vivid Account of One Mother’s Journey With Her Son
By Kelli Kelley

        he first image I had of my son was in       I thought my son had “caught up” and would         and participated in other fine motor skill
        a Polaroid picture – the lighting bad,      forever be past the challenges of his preterm      games. We instituted Therapeutic Brushing
        the image fuzzy. My mom taped the           birth. Imagine my surprise when shortly after      and Joint Compression Therapy throughout the
picture to the handrail of my hospital bed.         enrolling him in preschool, my son’s teacher       day as both had proven effective in decreasing
I was numb. The pain medication and con-            began to point out developmental delays and        sensory integration issues and often resulted in
flicting emotions flowing through my body           behavioral issues she suspected were associ-       improved life skills such as tactile responsive-
made it hard for me to focus on the photo.          ated with Sensory Integration Dysfunction. I       ness, focus, alertness, improved coordination
Could this really be my son?                        was heartbroken and angry. I was angry that        and self-regulation.
    At 24 week’s gestation, my son, Jackson,        Jackson no longer qualified for social services        Jackson loved therapy and never com-
was born by emergency C-section. He weighed         and questioned whether I had done enough           plained. It was just a part of life and our
one pound and eight ounces and was 12-and-          during his infancy. Despite an amazing pedia-      regular routine. I think on some intrinsic level
a-half inches long. His skin was transparent.       trician and wonderful therapists, why had I not    he knew that it helped him cope with everyday
He wore a tiny sleeping cap that engulfed his       known about Sensory Integration Dysfunction        life. His behavior drastically improved and he
head. He had wires and tubes touching almost        – a common neurological disorder for many          gained new skills quickly. But most milestones
every part of his body. Nothing could have          preterm children? How had I not been aware         were considerably delayed – from writing his
prepared me for such a sight.                       of his low muscle tone and continued fine          name to riding a bike. I fondly remember a
    The emotional, physical, financial and          motor challenges? Looking back, all the signs      friend reassuring me that Jackson would know
psychological impact of having a baby born          were there. But as a first-time mom, I did         how to properly use a fork by the time he was
preterm often blindsides parents. Little can        not know how to accurately gauge Jackson’s         in college – but by college most boys prefer
be done to prepare parents for the challenges       development. And because of his compro-            pizza anyway.
of having a baby in the neonatal intensive          mised immune system, we had remained iso-              Jackson graduated from private therapy
care unit (NICU). But with the support of           lated at home, declining large playdates for       prior to beginning kindergarten, but his very
dedicated neonatologists, caring nurses, social     fear of contracting Respiratory Syncytial Virus    wise and dedicated therapist cautioned me
workers, clergy, peer mentors, family and           (RSV), a major cause of respiratory illness in     that Jackson might need to come in for a “tune
friends, NICU parents slowly adjust to their        young children. I am sure some part of me did      up” from time to time. She was right. Jackson
new reality. And in many cases, that reality is     not want to admit that my son (who had come        is now 11, and has benefited from short occu-
the realization that the challenges of raising a    so far) was still behind.                          pational therapy sessions many times over the
preterm baby do not end at the hospital doors.                                                         years. With age and maturity, he has learned
                                                    MAKiNg Progress, sloW ANd steAdy                   to compensate for certain challenges and has
A Whole NeW World                                   Once over the initial shock and disappoint-        integrated coping skills for sensory integration
We were blessed to qualify for Early Childhood      ment, I took Jackson for a full evaluation at      dysfunction into his daily life. For instance,
Intervention services that provided weekly          a pediatric therapy center. This is when my        we found that wearing a heavy backpack and
physical, occupational and speech therapy for       blinders were removed and the real work            chewing gum greatly reduced anxiety and
our son after his discharge from the NICU. I        began. I devoured the book The Out-of-Sync         sensory overload during our summer trip to
embraced the support and worked daily with          Child, which helped me understand Jackson’s        Disney World.
Jackson to repeat the exercises the therapist       challenges with sensory issues. Our playtime           Jackson was officially diagnosed with
had taught me – doing my best to integrate          centered around activities in The Out-of-Sync      Attention Deficit Hyperactivity Disorder
exercises into his daily routine, including         Child Has Fun. We scheduled Jackson for            (ADHD) last year and began taking medica-
diaper changes, bath and tummy time. As he          weekly occupational, physical and speech           tion and seeing a child psychologist to help
grew, I eagerly engaged in games and activi-        therapy, opting to pay the significant out-of-     him learn to manage frustrations related to
ties that our occupational therapist suggested      pocket fees our insurance company would            the disorder.
for motor planning. I happily sprayed shaving       not cover rather than saving for college. How          An outgoing fifth grader, Jackson is an
cream on our kitchen table to allow Jackson to      could we think about college if our son would      avid reader and performs on grade level. He
experience different textures. I bought puzzles     not be “kindergarten ready” without therapy.       enjoys sports even though he still struggles
and toys to challenge his hand-eye coordina-            Jackson’s therapists recommended               with coordination and motor planning. And
tion and joyfully introduced new food textures      Auditory Integration Therapy (AIT) to assist       he has found his strengths in acting and
to support his oral development.                    with auditory processing problems. He was so       never shies away from the stage.
    At the age of three, Jackson graduated from     precious wearing his big earphones and CD              Therapy has been and will most like-
the program. I was ecstatic and incredibly naïve.   fanny pack while he played with his puzzles        ly continue to be an important part of

                                                                                                      March 2012 • • Case In Point 31
Generational HealtH
Jackson’s life. I am so grateful to all the             ue regular developmental screenings and to          much these days. The skill will come in
therapists who loved and cared for him and              supplement services provided through state          time. And I will cheer the loudest when it
contributed to his success. As the founder              and federal programs with private therapy.          does. Who knows, I may even take him out
of Hand to Hold, a nonprofit that provides                  The journey of prematurity does not end at      for pizza to celebrate.
support to parents of preemies and babies               the hospital doors. In many cases, it is just the
born with special healthcare needs, I have              beginning. Children born preterm may need                         Kelli Kelley is the founder and
had the opportunity to meet thousands of                ongoing medical care and therapy for many                         executive director of Hand to
children born preterm and provide informa-              years to overcome the challenges presented                        Hold, a nonprofit providing nav-
tion and ongoing education to their parents.            by their early births. One thing I have learned                   igation resources and support
I am a strong proponent for early inter-                about preemies, they are fighters. And with the                   programs to parents of preemies,
vention. Hand to Hold strives to educate                right resources and support, they can lead full,    babies born with special healthcare needs and
parents about the challenges their children             active and healthy lives.                           those who experience a loss due to these com-
might face and prepare them to meet those                   Jackson still struggles with a knife            plications. Web: Contact:
needs. I frequently advise parents to contin-           and fork…but that does not worry me too   

continued from page 14                                  continued from page 16                              ties for improvement that care manage-
                                                                                                            ment identifies can be recognized. This
the Ministry of Health and Social Welfare,              How can case management departments                 recognition will lead to collaboration and
has established programs to minimize the                enhance their collaboration with physicians         development of innovative solutions. These
impact of HIV and AIDS by providing HIV                 to better the organization as a whole?              improvements will bring necessary change
and TB prevention and care for apparel                                                                      that will enhance the overall operations and
employees and their spouses or partners.                Care management leaders can enhance their           performance of the organization.
                                                        collaboration with physicians by identify-
State of Rhode Island, Office of Employee               ing a physician champion for care manage-                     Charleeda Redman, RN, MSN
Benefits, Rewards for Wellness                          ment initiatives. The approach to identify-                   ACM, is the executive director of
This program was established by the                     ing the right physician champion must                         corporate care management at the
Rhode Island state government to encour-                be strategic. In the past, senior leadership                  University of Pittsburgh Medical
age long-term employee lifestyle changes                assigned a traditional doctor or seasoned           Center, a 20 acute care hospital integrated
and improved health and wellbeing through               physician who could no longer do clinical           delivery system, where she is responsible
wellness programs and screenings. The                   practice to this position. This approach is         for overseeing third party audits, system
program ties beneficial lifestyle choices               archaic. The individual in this position must       integration, denial management, pre-arrival
made through the program to financial sav-              be willing to challenge the “status quo”            authorization, and training and develop-
ings, awarding participating employees with             and drive change. Through the leadership            ment of hospital case managers. Contact:
health insurance premium co-share credits.              of this physician champion the opportuni- 

Universidade Federal de Minas Gerais,
Telecare to Remote Areas (Brazil)                       continued from page 19
Telehealth supports remote municipalities                                                                              Patricia Jones, RN, MBA, (top)
in Brazil, allowing access to specialized               particularly in care coordination. Through                     is a Commissioner of the
medical services by low-income popula-                  facilitation of communication and sharing                      Commission for Case Manager
tions located in remote areas. The program              of information, technology tools become                        Certification (CCMC), and is
allows health professionals in geographi-               invaluable to helping case managers coordi-                    also a healthcare management
cally isolated areas, with little access to             nate care across multiple providers all along                  consultant, technology and oper-
other specialized professionals and without             the healthcare spectrum. Through technology                    ations solutions, for Milliman, a
technological resources, to keep abreast                to gather and share information, case manag-                   leading actuarial and consulting
with current techniques and diagnose and                ers are able to address the needs of the whole      firm. Contact:
treat certain diseases or urgent cases.                 patient to achieve positive outcomes.               Patrice V. Sminkey, RN, is the Chief
                                                                                                            Executive Officer of the CCMC (www.
Carl Graziano is vice president, strategic              References                                , which is the first
communications, for the Care Continuum                  Commission for Case Manager Certification.          and largest nationally accredited organiza-
Alliance, a trade association for population            (2011). Definition of Case Management.              tion that certifies case managers. To date,
health management based in Washington,                       the CCMC has board certified more than
D.C. Contact: cgraziano@carecontinuum.                  definition%20of%20case%20management.                35,000 professional case managers.
org                                                     Accessed November 13, 2011                          Contact:

32 Case In Point • • March 2012

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