No amount of alcohol is safe during pregnancy, according to a new report by a leading U.S. pediatricians’ group. And that prevention is key because people impaired by their mother’s drinking during pregnancy do not have access to programs focused solely on fetal alcohol spectrum disorder.
“We are all about prevention and we would like to get the message out that there is no safe time, no safe amount and no safe type of alcohol during pregnancy,” said Sara Rumann, Health Start and Pregnancy Wellness program manager for the Arizona Department of Health Services Bureau of Women’s and Children’s Health.
She said the state has long focused on educating women that any drinking during pregnancy may be harmful.
FASD is the catch-all term that encompasses the range of possible diagnoses of the physical and mental adverse effects of prenatal exposure to alcohol. The new report, published Monday, by the American Academy of Pediatrics, said alcohol-related birth defects are completely preventable when women abstain from alcohol consumption while pregnant. According to statistics, about 1 percent of babies born have FASD.
“In Arizona, that would be about 866 babies per year,” said Rumann.
However, the new report said “… the true FASD prevalence remains unknown and the actual impact underappreciated.”
Resources for children who have FASD are limited in two ways. FASD is commonly misdiagnosed, so children don’t receive the right treatment. In addition, Arizona lacks state-funded centers or programs focused on FASD. Arizona focuses on prevention.
A common misconception is that a child with FASD would have three recognizable facial abnormalities: a thin upper lip, a smooth upper lip and a shorter distance from the outer corner to the inner corner of the eye. However, those who have FASD do not always show these physical traits, nor do they always have a below average IQ, another common misconception, and so it can be hard to diagnose FASD, the reported stated.
The mental and behavioral side effects are lifelong and are commonly misdiagnosed as attention deficit hyperactive disorder and as specific learning disabilities. Those with FASD often have impaired impulse control, impaired memory skills and impaired problem solving abilities, and may also have difficulties with abstract reasoning and language use.
In Tucson, the Fetal Alcohol Resource Center is the most substantial resource for people with FASD; it was set up by the federal Substance Abuse and Mental Health Services Administration. After federal funding was cut, the center started to rely on donations to continue to provide support for parents and children with FASD.
The Center’s director, Teresa Kellerman, is the parent of an adopted child with fetal alcohol syndrome as well as the state coordinator for FASD. Kellerman’s position is only part time, but she has devoted much of her life – and even her lottery winnings – to helping those with FASD. She doesn’t think the state is doing enough.
“My focus is on prevention and intervention, we are kind of missing the boat in prevention,” she said. “We tell women ‘don’t drink during pregnancy’ but we don’t tell women ‘don’t drink if you may be pregnant.’ Birth control failure rate is really high and women get pregnant and don’t know that they are pregnant so they keep drinking, until they find out.”
Tiffany O’Neil, a 21-year-old diagnosed with FAS, knows first hand about the struggles of living with the disorder. She said she has a hard time describing how she feels to others.
“People don’t understand me because I get so nervous and then I try to explain myself to other people and then it comes out all wrong,” she said. “It’s a struggle in my relationships and stuff like that.”
O’Neil’s mother, Bobbie Kithcart, adopted O’Neil as an infant. She was abandoned by her mother and found starving with her two older sisters. It took nearly seven years for O’Neil to be properly diagnosed with FAS, Kithcart said.
“These kids look fine, they fit into society but because their frontal lobes don’t work properly they really don’t fit into society,” she said.
Kithcart said she was relieved when doctors finally diagnosed O’Neil, until she realized that the education system would only recognize her as a “special-ed kid.” This meant O’Neil took classes for children with developmental disabilities, but she still struggled because the classes didn’t cater to the needs of her specific disability.
Kithcart and Kellerman agree that something more needs to be done to treat those who have FASD rather than just focus on prevention efforts.
“I would like to see the state fund FAS prevention and intervention, that
affects all areas of the state with full-time assistance and funding for programs,” said Kellerman, she also wants to see increased awareness.
“The more awareness we raise, the more people will understand the nature of FAS, so that teachers, counselors and health providers will recognize the symptoms so that we can treat the symptoms correctly.”
Kellerman said parents who need support or information about FASD can email her at [email protected].