Fetal Alcohol Syndrome: A Hidden Epidemic?

By Neville Elder 08/16/16

Stigma and misdiagnoses have obscured FASD, which affects a large number of Americans, especially in poor communities. 

drinking while pregnant

In front of Dr. Carl Bell, staff psychiatrist at Jackson Park Hospital on the South Side of Chicago, sat a 30-year-old woman. Her three children were all wards of the state. She has a bad temper and trouble focusing, and as much as she has often made bad choices in life, she seems unable to learn from them.

She, too, had been in foster care, she’d never had a job, and the basic skills she should’ve learned by the seventh grade are completely beyond her. As Dr. Bell studied her face, he noted slightly hooded eyes and thin upper lip, all common characteristics in children in the poor neighborhood of North Nashville, where he went to medical school, and, indeed, here in the neighborhood of Chicago where he now runs his practice. Back then in the 1960s, doctors called children with the same facial characteristics "FLK," shorthand for "funny looking kids." As he watched his patient, a young woman from Chicago’s South Side, struggling to communicate, he suddenly recognized that her distinctive facial features always seemed to come hand-in-hand with problems sleeping, anger management, and learning difficulties.

She was suffering from Fetal Alcohol Spectrum Disorder (FASD).

“I’d seen this pattern in children as far back as med school. We were taught that rates of what was then called mild, mental retardation, were twice as high in low-income Afro-American communities, and I couldn’t figure out why that was,” says Dr. Bell.

“But I’m not putting the pieces together—I saw them (symptoms of FAE) in practice, in juvenile detention, in foster care.”

It was 2013. This was Dr. Bell’s eureka! moment.

“When I saw this woman, I said ‘Ah!’ and I started looking for it and I discovered 39% of them (patients at Jackson Park Hospital) had it.”

At the time, he was also involved in the committee that was revising the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and was curious to see what the consensus was. He found that for the first time, the committee had drawn the same conclusions—exposure to alcohol in the womb caused developmental problems in children.

Fetal Alcohol Syndrome (FAS) is the far end on a broad spectrum of symptoms. It is identifiable with facial characteristics including hooded eyes, and a smooth philtrum (that indentation under the nose above the lip). On the spectrum exist varying degrees of behavioral problems and learning disabilities.

Julie Kable, a pediatric psychologist and assistant professor at the Emory University School of Medicine in Atlanta, Georgia, says FAS has been around since man discovered alcohol. Just before the First World War, when presenting legislation in the British government to care for "feeble-minded" children, Members of Parliament paid particular attention to the children of alcoholics. But it wasn’t acknowledged clinically in the U.S. until Dr. Ken Jones and Dr. David Smith’s work in 1973. Even then, it wasn’t taken seriously.

“A lot of people didn’t believe it, to be honest,” says Dr. Kable. “They thought it was just malnutrition or some other syndrome.”

Only after 35 years of research and successful attempts to replicate the characteristics of FAE on rat subjects in the lab, has it been accepted as an illness.

Diagnosis, however, is problematic.

“Some women who drink heavily have babies born with very little impact,” says Kable. “We know there are other [factors] besides the alcohol. One of these things is the age (of the mother). The nutritional condition of the mother (also) impacts. And then there’s a variety of genetic things we don’t know—how that mom metabolizes alcohol and how that alcohol reacts relative to the fetus.”

As a person grows older, the telltale facial signs fade and disappear—leaving problems with attention and memory deficit, hyperactivity and poor problem-solving skills (including money management) to be assigned as other disorders. 

FAS is acquired biology—it’s not hereditary. In other words, if you were to get brain damage from falling down the stairs, you wouldn’t pass the symptoms on to your child. And as such, the cure is simple.

“(People believe) the greatest amount of potential harm (comes from) illicit drugs and tobacco,” says Dr. Kable. “Alcohol is more of a risk than smoking. It’s an anomaly to see a heavy drinker and a healthy baby.”

“FAS is the leading cause of preventable intellectual instability in our society,” says Kable. “But, we don’t want a punitive model for women who drink during pregnancy.”

So far, attempts at spreading the word have been patchy. The Centers for Disease Control and Prevention (CDC) botched an attempt to alert women to the dangers of drinking during pregnancy this past February, when they declared that drinking not only harms the fetus, but may cause STDs and lead to sexual assault. It was a wasted opportunity and the CDC got rightfully slammed for its clumsy and offensive campaign.

“The conflict comes with the mom's right to consume what she wants versus the fetus’ right to be protected,” says Kable. “It’s not a certainty, even if the mom’s an alcoholic, that a child will have FAS. But it’s a certainty they won’t if they don’t drink.”

“We’re talking about social drinking not alcohol abuse,” says Dr. Bell. “It sounds so small and petty and minimal—it's just a beer.”

In Dr. Bell’s experience, even creating a sound public awareness campaign to educate prospective mothers about the dangers of drinking during pregnancy won’t be as easy as it sounds. In the South Side of Chicago—where according the Dr. Bell, the only businesses that thrive are liquor stores—many pregnancies are unplanned. 

“The second they figured out they were pregnant, they stopped,” says Dr. Bell, “but the damage is done in the first three weeks.”

Some of Dr. Kable’s work at Emory helps parents with coping skills for affected children.

“We teach you how to teach your child,” says Dr. Kable.

She helps parents help their kids to develop self-regulation with FAR, a simple system to organize problem solving:

-Focus: make a plan

-Act: follow your plan out

-Reflect: consider the results and the plan’s success

“Slow down and think it through, rather than act impulsively,” says Dr. Kable. “We had one family member report, when they had to open up and put together a bookshelf—as they were laying it all out, (the child announced) they should to use FAR (to build it).”

Dr. Bell advocates taking large doses of choline, a B complex vitamin that is vital in the production of cell membranes during pregnancy and early childhood, as a preventative measure. He also believes supplementing choline in adults may increase chances of recovery from some of the symptoms of FAS.

“I had a patient I thought was autistic until I got a history from the mother, another one who did not know she was pregnant for three months,” says Dr. Bell. “I gave him 500 mg twice a day, and after a year and a half, this seemingly autistic adult walked into my office and said ‘How are you?’ and had a rudimentary conversation and repeated his address and phone number (for the first time). He was 33.”

The numbers of people suffering from FAE are remarkably high in Dr. Bell’s community. But FAS symptoms are showing up in everywhere. In 2014, a team led by Dr. Philip May at the University of North Carolina revealed that 2%-5% of first graders, in a representative middle class neighborhood of an unidentified midwestern city, could be placed on the FAE spectrum.

“FASD is the leading cause of preventable intellectual instability in our society,” says Dr. Kable. The message is clear: if you are pregnant, spare yourself—and your unborn child—that one little drink.

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British born Neville Elder is a writer,photographer and filmmaker. He's been sober since 2006, lived in New York since 2001 and is in no hurry to move back to a Brexited Britain. He writes the odd murder ballad with his band Thee Shambels and teaches photography at the New York Institute of photography. Find him on Linkedin and Twitter.