It’s 100 percent preventable. So why are hundreds of Minnesota babies born with Fetal Alcohol Spectrum Disorder (FASD) each year?
“A woman who is chemically dependent, struggling with drinking during pregnancy needs support. We need to wrap our arms around that woman, and give her the support she needs [to quit].”
– Sara Messelt
It was too late.
The minute Tonya Clark (name changed to protect her daughter’s privacy) found out she was pregnant, she quit drinking. But by then, the fetus that became her daughter, Crystal, had already suffered irreversible brain damage. When Clark learned she was pregnant, “I started taking better care of myself,” she said. Though she didn’t know much about FASD, she knew that taking care of herself meant no more weekend drinking.
But the damage had been done.
The ABCs of FASD
According to the National Organization on Fetal Alcohol Syndrome (NOFAS), FASD characteristics include brain damage, facial deformities and growth deficits. Other common side effects are heart, liver and kidney defects, vision and hearing problems. Individuals with FAS have difficulties with learning, attention, memory and problem solving.
A spectrum of disorders
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After struggling through her school years, Crystal Clark, who is 20, is unable to keep a job, and lives at home with her mother. She has an IQ of 70 and may never be able to live independently. And Tonya Clark, an attorney and children’s advocate, volunteers her time with the Minnesota Organization on Fetal Alcohol Syndrome (MOFAS), speaking publicly about what it’s like to raise a child with FASD.
The effects of FASD can include brain damage, facial deformities and growth problems. Other common side effects are damage to the heart, liver and kidneys, and vision and hearing problems. Individuals with FASD often have difficulties with learning, attention, memory and problem solving.
“Nobody drinks during pregnancy because they want to hurt their kids,” said MOFAS Executive Director Sara Messelt. Most women who continue to drink do so for one of two reasons: They are chemically dependent or they don’t know any better, she said. “A woman who is chemically dependent, struggling with drinking during pregnancy needs support,” Messelt said. “We need to wrap our arms around that woman, and give her the support she needs [to quit].”
Suburbia needs to know
FASD is a problem that knows no socioeconomic bounds: According to Messelt, the group of women least likely to quit drinking while pregnant are college-educated, with an income higher than $50,000. These women, she said, are less likely to understand the consequences to a developing fetus, in large part because they are less educated about FASD. Messelt, who is white and lives in the suburbs, uses her own experience when pregnant with her son as an example of how many doctors don’t talk to their patients about FASD: “My doctor asked me once, ‘You don’t drink, do you?'” Messelt believes that if she were a woman of color in an inner-city neighborhood, “I’d be asked eight times since Sunday.”
You would definitely be asked repeatedly if you walked into Lydia Caros’ clinic. Caros, an M.D. who’s devoted 20 years of her life to working on FASD issues, is executive director of Minneapolis’ Native American Community Clinic. She has worked with other doctors to develop a screening for alcohol use in pregnant women. Now she’s trying to bring the screening to other clinics. “It’s hard to work in the suburbs, to convince people that pregnant women [who live there] drink … a lot of people think this is a Native [American] problem.” About 90 percent of Caros’ patients are low-income people of color. She said that though 70 percent drink alcohol, the vast majority quit when they become pregnant; she estimates that only 2 percent continue to drink.
Why is it necessary to educate doctors about their patients and drinking? Older physicians may not have learned about FASD in medical school, Caros said. They may not know much about FASD. Or they may believe that their patients would not drink during pregnancy.
Messelt and Jennifer Steive, MOFAS’ public awareness and communications coordinators, can tick off a list of experiences back up the perception that FASD is an “inner city problem.” One example is striking: The women they spoke to at an inner-city chemical dependency program were well-versed about FASD, while women at one of MOFAS’ “pregnant pause” educational and social events, where pregnant women are invited into bars to drink tasty non-alcoholic drinks and learn about FASD, tended to know little, or to have incorrect information. “One woman [at a Mankato event] said she’d been ‘cleared’ by her doctor to drink,” Steive said. Other women said they thought it would be OK to have “a little” wine.
“Is one glass of wine OK? We just don’t know,” Caros said. “If a woman [is seeking] permission for one [glass of wine], she may be struggling with alcohol abuse.” Caros doesn’t think there is a safe amount; there are, she said, “so many things we don’t know about FASD.”
While science hasn’t learned the total extent of the damage drinking can cause to a developing fetus, Caros and others said that depending on when and how much a pregnant woman drinks, and other factors, such as her health and nutrition, every part of a developing fetus can be potentially affected by FASD. Because the brain development is ongoing, brain damage can occur at any time.
To donate to MOFAS, go to www.mofas.org/giving.html
MOFAS is always seeking community volunteers. Call Sara Messelt at 651-917-2370 to learn about direct service, administrative, committee and governance opportunities.
Interested in learning more about adopting a child with FASD? The website of Minnesota Adoption Support and Preservation is the place to start. Go to www.mnasap.org or call 612-798-4033.