September 15, 2008
Fetal Alcohol Syndrome is 100 percent preventable
contributed by Trish Naughton, PHN, Bethel Regional Public Health Center
Fetal Alcohol Awareness Day on September 9 was an opportunity to revisit this 100 percent preventable cause of mental, physical, behavioral and learning disabilities in children of women who drink alcohol during pregnancy.
Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term describing a range of effects that can occur in a person whose mother drank alcohol during pregnancy. These effects can include physical, mental, behavioral, and/or learning disabilities, with possible lifelong implications. "FASD" is not a clinical diagnosis. Physical symptoms may not appear; hence concerns are harder to identify.
FAS (Fetal Alcohol Syndrome) is permanent and is one of the leading known preventable causes of mental retardation and birth defects. It represents the severe end of the range of possible effects. Signs may include abnormal facial features, growth deficiency, and central nervous system (CNS)problems, including problems with learning, memory, attention span, communication, vision, and/or hearing. These can lead to difficulties in school and with getting along with others.
FAE (Fetal Alcohol Effects) has been used to describe behavioral and cognitive problems in children who may not have symptoms of FAS. In 1996, the term FAE was replaced with:
- ARND (Alcohol-Related Neurodevelopmental Disorder). People with ARND can have functional or mental problems, including learning difficulties, poor school performance, and poor impulse control.
- ARBD (Alcohol-Related Birth Defect). ARBD can lead to problems with heart, kidneys, bones, and/or hearing.
The reported rates of FAS vary widely. CDC studies show FAS rates ranging from 0.2 to 1.5 cases per 1,000 live births in different areas of the United States. ARND and ARBD are believed to occur about three times as often as FAS. A recent report estimates that the lifetime cost for one individual with FAS in 2002 was $2 million. For people with severe problems, such as profound mental retardation, costs are much higher.
What about FASD in Alaska?
According to recent State of Alaska DHSS surveillance data, more than 126 children are born at risk for FASD each year in Alaska. Specific surveillance information is available by accessing State of Alaska web-site then site-search "FASD".
The State of Alaska has 5 legislative bills related to FASD in various stages of becoming law (some are completed). These include:
1. Offering priority for entry into substance abuse treatment to pregnant women
2. Provision for TANF funding to go toward evidence-based program development for prevention and treatment of pregnant women
3. Bill # HB312 with suggested actions including in part:
a. Tax increase on alcohol, money to be used for FAE FASD prevention awareness
b. Involuntary commitment of pregnant women who use alcohol
c. Fines and/or taking of permanent fund monies of establishments which sell alcohol to pregnant women
d. Requirement for hospitals, schools, and establishments promoting alcohol sales, to provide warning information re alcohol consumption during pregnancy
4. Requirement for health care providers/healers who become aware of adverse effects of alcohol on child, to report this
5. Proclamation September 9 of each year as FASD Awareness Day including a suggested "moment of reflection" at 9 a.m.
Other Questions
Is FASD hereditary?
No, but a vulnerability to addiction may be.
What about the man's role? And other family and friends?
Make a commitment to help; offer support and solidarity
Set a good example; act as role models
Learn as much as we can and teach others
Supportive abstinence from alcohol and other substances
I think I have FASD, who could help me?
Parent, elder, or trusted adult
School counselor
Doctor or health care provider
Faith-based helper (spiritual healer, minister, rabbi, priest)
My child (friend, sister, uncle ...) has FASD, where can I learn more?
Stone Soup - www.stonesoupgroup.org/fas
State of Alaska - www.hss.state.ak.us/fas
State of Alaska - www.eed.state.ak.us.tls.fasd
National Organization on Fetal Alcohol Syndrome (NOFAS) - www.nofas.org
Centers for Disease Control (CDC) www.cdc.gov/ncbddd/fas
National Institute of Health -
www.americanindianhealth.nlm.nih.gov/children-health.html
SAMHSA - http://www.fascenter.samhsa.gov/
Kids Health - www.kidshealth.org (type in "alcohol" and find links for kids)
For kids - www.ihs.gov/PublicInfo/Publications/McGruff/lessons/alcohol.asp
In Summary
1. Drinking during pregnancy can cause permanent damage to a developing fetus.
2. FAS [the diagnosis] is one of the most common causes of mental retardation, and is entirely preventable.
3. According to recent State of Alaska DHSS surveillance data, more than 126 children are born at risk for FASD each year in Alaska.
4. Obtaining an FAS diagnosis and learning how to assist with everyday activities can improve an individual's ability to function in the world and may reduce secondary disabilities like depression and school failure.
5. FASD is found in all races and all socio-economic groups-wherever women drink alcohol, FASD exists.
6. There is no safe level of alcohol consumption during pregnancy.
7. Women should stop drinking prior to trying to conceive-alcohol can cause damage to a developing fetus even before a woman knows she is pregnant.
8. With the right diagnosis, support and understanding, many individuals with FASD are living happy and full lives.
Acknowledging Ardyce and Gary Turner
From the State of Alaska FAS website (www.hss.state.ak.us/fas)
Many people in Alaska are helping to improve the quality of life for people with FASD and assist in prevention efforts. One however, stands out. For more than 10 years Ardyce Turner has changed how people view individuals with FAS. As a dedicated parent advocate, community educator, and activist she has challenged ineffective service delivery notions, enacted systems change, and prevented FAS by supporting women in making healthy choices during their pregnancy.
Before there were formal FAS Diagnostic Teams in the State, Ardyce sold crafts to fundraise for specialists to come to Bethel. She elicited financial and other support from community members to support women going to treatment. And despite it being against her nature, she spoke out at school board meetings and community gatherings for the needs of children with FAS. She educated herself on FAS and shared her knowledge with others.
As former FAS coordinator at YKHC, Ardyce served as a member of the Bethel Community Diagnostic team, she reestablished Bethel's FAS parent support group, inspired Bethel's volunteer FAS Task Force, served on Alaska's Steering Committee on FAS, is an inspirational supporter of the sobriety movement, a devoted parent of a young adult with FAS, and parent navigator.
For everything Ardyce Turner accomplished, her husband Gary was a major force behind it. Gary was always there cheering Ardyce on, attending trainings and telling members of the Task Force that they were doing a good job. Gary was at many of the FAS task Force meetings; he was active in the sobriety movement; on his own terms he has long advocated for the needs of individuals with FASD. Together with his wife, Ardyce, he has done an inspirational job in changing attitudes about FASD.
