March 15, 2004
By Community Health & Wellness Department, Health Education Program
The field of FAS has gone through many name changes. It's sometimes called Fetal Alcohol Syndrome (FAS), Fetal Alcohol Effects (FAE), and Alcohol Related Birth Defects (ARBD). The newest term is Fetal Alcohol Spectrum Disorder (FASD). This most recent term, FASD, is used to describe the range of conditions that may occur in children whose mothers drank alcohol during the pregnancy. For example, brain damage from alcohol exposure may be severe for one child, but not as severe in another child whose mother reported drinking the same amount. It is also possible for children to have the growth and facial signs caused by alcohol exposure, but maybe not the brain damage.
Diagnosing a child for FASD requires a team. Children are still being born in the YK Delta with both brain and physical damage due to alcohol exposure. On average, the Bethel FASD Team receives three referrals a month. Of the 224 children referred since the team started in 2000, 101 have been assessed and have a complete diagnosis. In order to diagnose the damage done by alcohol, a child has to be seen by a medical provider and a psychologist. The assessment takes an hour for the physical assessment and 3-4 hours for the brain testing. Bethel is fortunate to have a trained team that provides this service. Dedicated team members are Vince Chmielarczyk (Pediatric NP), Jojo Powell (LKSD Psychologist), and Roger Abernathy (LYSD Psychologist). Lorin Bradbury, YKHC Psychologist, has been with the team since its creation in 2000 and acts as a consultant on brain testing.
In addition to this core team are the many dedicated people from other agencies. Collaborating agencies and entities include LKSD Social Work, LKSD Special Education/FAS Coordinator, Bethel Community Services, Office of Children's Services, YKHC Pediatric Clinic, and State of Alaska Vocational Rehabilitation.
Even with this dedication, the need for assessments is so great that the team cannot meet all the requests. There are two main barriers to providing complete FASD services. First, there is no one at YKHC who can perform the cognitive testing. There are currently 55 children who have been referred to the team and who are still waiting for brain assessments.
The next barrier is the lack of follow-up services for families and individuals living with FASD. The damage done to the brain is still a new science. Medical providers only began to discover this as a disability in the 1970's. Thanks to the State of Alaska, which saw the need and decided to make this a priority, there are 13 diagnostic teams in the state. The grant money awarded to YKHC in 2000 was used to develop a diagnostic team. The next step in providing quality services is to provide follow-up and services to those who have been diagnosed.
The FASD Diagnostic Team has been very successful over the last four years. However, the program is ready to move to the next level. This gap in services has been brought to the attention of YKHC administrators and, as a result, there is now a Napartet team investigating possible improvements.
We, also, need the help of community members like yourself if we are to move forward. If you referred a child to our team but never received a diagnosis or follow- up services, please contact DeShan Foret, Health Education Coordinator, at 543- 6493. We need your help in documenting the ongoing need for FASD diagnostic services. We also request that your community schedule a community presentation on preventing FASD. Through education and community support we hope there will be a day when a FASD diagnostic team is not needed, because all children will be born alcohol-free.