Mission of hope

Group gives resources and support to families affected by fetal alcohol syndrome.

The anxiety level rises quickly when a staff member of Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) hears someone say it’s OK to drink during pregnancy. And they are dismayed about Emily Oster’s book “Expecting Better: Why the Conventional Pregnancy Wisdom Is Wrong – and What You Need to Know,” which suggests that drinking small amounts of alcohol isn’t harmful to the baby.

That flies in the face of 40 years of research, according to Emily Gunderson, director of communications at MOFAS. Her group and many major medical organizations in the United States share the same message: No amount of alcohol is safe during pregnancy.

“Every woman and every developing baby is different,” Gunderson said. “We don’t know how much is too much. That’s kind of the mystical question.”

Sue Terwey, the organization’s family engagement director, is a little more blunt. “Would you give a 2-month-old baby any alcohol? Somehow women would be horrified of that thought, but yet the baby gets the same alcohol the mother gets because they have the same bloodstream,” Terwey said. “If mom has four drinks and goes on a binge while she’s pregnant, baby is binging with her.”

A look at the symptoms

Fetal alcohol spectrum disorders (FASD) are a group of disorders linked to alcohol exposure in the womb. Like autism spectrum disorder, symptoms can range from mild to severe. About 10 percent of children have distinctive facial features caused by the disorder, Terwey said.

Other symptoms include developmental delays, memory issues, behavioral problems, mental illness, and struggles with math and reading. In severe cases, the mother may have a miscarriage or the baby may have brain damage.

Because many children go undiagnosed or misdiagnosed, the exact number of people with an FASD is unknown. One study suggests it could be 1 in 100 live births.

Lisa (not her real name) has a son with an FASD. She had been told she was infertile, so she was surprised to learn at 8 to 10 weeks’ gestation that she was pregnant. Lisa was a social drinker and asked her doctor if she could drink alcohol.

“My doctor informed me that it took a lot of alcohol to cause FAS and that drinking small amounts would definitely not be a problem,” she said. So she often shared beers with her husband.

Lisa estimated that her son’s exposure was light to moderate. But she noticed challenges with him starting when he was a toddler. When he was 15, “I finally put 2 and 2 together that those challenges were a result of that [drinking],” Lisa said.

Zero alcohol for nine months

For many families, the realization that a child has an FASD often comes when the child is 8 to 12 years old, Terwey said. That’s when many of the symptoms are becoming clear. MOFAS provides resources and support to families affected by an FASD – “giving hope,” Terwey said.

MOFAS also is trying to get the word out wherever women of childbearing age are gathered that a no-alcohol pregnancy is worth celebrating. The group offers this easy message: 049 – Zero Alcohol for Nine Months.

“We need to all understand the danger of drinking during pregnancy and then be able to share the information with our daughters and our sisters and our co-workers,” Gunderson said.

Said Lisa: “I get really frustrated with the studies that say it takes a lot of alcohol or that women with light drinking don’t have children with problems. It’s like, you walk a mile in my shoes and then you walk 10 miles in my son’s shoes and then you tell me that it’s OK for women to drink wine while they’re pregnant. Because there is no known safe amount. Absolutely not.

“If there was one thing I could change in my life, that would be it. But now I can’t take those drinks back, and it has cost me.”

Is it an FASD or something else?

Fetal alcohol spectrum disorders (FASD) may be difficult to diagnose. “A lot of the symptoms or behaviors look a lot like some autism behaviors or ADHD behaviors,” Gunderson said.

Among the similarities: behavior problems (e.g., rages, tantrums), cognitive disabilities, delayed milestones, sensory issues (e.g., dislike of certain stimuli), social awkwardness and short attention span.

“[FASD] has been considered a physical disability. The recent release of the DSM-5 [the American Psychiatric Association’s diagnostic tool] now includes neurodevelopmental disorder-prenatal alcohol exposure,” Terwey said. “That will open doors for mental health professionals to address this condition more effectively.”

Some ways that FASD differs from autism spectrum disorder include: symptoms begin at birth; girls and boys are equally affected; and children may be smart and sociable. In Lisa’s case, her son was quite bright, which made her suspicions of FASD harder for others to take seriously.

Based on anecdotal evidence, Gunderson and Terwey think FASD, autism spectrum disorder, ADHD (attention deficit hyperactivity disorder), and even bipolar disorder may be often confused and misdiagnosed in children. They would like to see doctors and mental health professionals ask more questions during evaluations about the mother’s alcohol use.

FFI: www.mofas.org