This Chicago doctor stumbled on a hidden epidemic of fetal brain damage (Excerpt)

PBS

By Judith Graham, Stat

May 31, 2016

CHICAGO — The agitated mom had three kids in foster care and she wanted them back. But she didn’t understand how to parent. She’d never worked. She had a short fuse. She was slow and didn’t seem to learn from experience.

Dr. Carl Bell studied the young woman. Flat cheeks. Thin upper lip. Folds at the corner of her eyes. It hit him like a thunderbolt: She had subtle features of fetal alcohol syndrome.

Bell had seen thousands of patients like this over the past 40 years and been baffled by their explosive tempers, poor social skills, spotty memories, trouble communicating, and learning disabilities.

Now, this psychiatrist realized their behavior might be explained by exposure to alcohol in the womb.

No one realizes how common it actually is.

Bell had stumbled on a hidden epidemic of brain damage, concealed by shame and stigma, which affects up to 5 percent of Americans — and in poor communities, possibly far more.

The victims are often misdiagnosed with psychiatric disorders or antisocial tendencies. As kids, they’re stuck in special education classes. As adults, they often end up homeless or in jail. They’re deemed unruly, uncompliant, out of control.

Instead, they may have fetal alcohol spectrum disorder, or FASD.

“No one realizes how common it actually is,” said Bell, 68, who is nationally known for his work exploring the impact of trauma on children in disadvantaged neighborhoods.

His jolt of recognition in 2012 came as other researchers around the country were beginning to look much more closely at fetal alcohol spectrum disorder. The most recent version of the Diagnostic and Statistical Manual of Mental Disorders, published in 2013, includes it for the first time as a condition that needs further exploration.

Today, FASD is widely recognized as the largest preventable cause of birth defects and developmental disabilities in the US.

‘I’ve never been so stunned in my life’

In 2014, a team of researchers led by Philip May of the University of North Carolina at Chapel Hill published a seminal paper showing that 2 to 5 percent of first-graders in a largely white, largely middle-class Midwestern city had fetal alcohol spectrum disorder.

At the far end of that spectrum lies fetal alcohol syndrome, identified in 1973. Children affected have intellectual disabilities, small heads, stunted growth, and unusual, characteristic facial features: small eyes, a thin upper lip, and a smooth area between the nose and that lip known as the philtrum.

Other people on the spectrum lack these distinctive physical features but are troubled by poor judgment, difficulty planning, impulsivity, and distractibility. They’re often behind in speech and language skills, and have trouble performing tasks in a sequence.

May’s report hit a nerve: Previous estimates of the prevalence of FASD had been much lower. But his calculations may still underestimate the problem. Two new reports, yet to be published, will show that fetal alcohol disorders are more common than May calculated, according to Julie Kable, an assistant professor of psychiatry at Emory University who studies FASD.

Bell suspected the numbers would be higher still in poor, tough, neighborhoods where liquor stores can be found on every other block.

So he conducted a formal study of 611 of his psychiatric patients on Chicago’s South Side. Nearly 40 percent had FASD.

It wasn’t a representative sample of the population, and Bell wasn’t administering sophisticated diagnostic tests, but the results were eye-opening.

“No one had looked at the prevalence of FASD in low-income African American communities before,” Bell said. “I’ve never been so stunned in my life.”

At another Chicago clinic, Dr. Ira Chasnoff, a pediatrician, was testing kids and teens who’d been adopted or were in foster care and having serious behavioral problems. His examinations were more comprehensive, involving a thorough assessment of intelligence, executive functioning, speech and language, sensory processing, and social skills, among other factors. They involved a team of professionals and took a full day or more to complete.

Chasnoff’s findings, published last year: Nearly 30 percent of these youngsters had fetal alcohol spectrum disorders. Eighty percent had not received a diagnosis of this kind previously.

Such studies, along with others across the country, are bringing fresh attention to the impact of exposure to alcohol in utero.

Bell “excels at changing the way people think,” said Gene Griffin, a retired professor of psychiatry at Northwestern University’s medical school.

There’s no question that the young African-Americans that Bell is trying to call attention to are engaging in high-risk behaviors, Griffin continued. The question is, how do we explain that — and how do we respond? Are the kids bad? Traumatized? Mentally ill? Marked by adverse environments? Or do we trace their behavior to their exposure, in utero, to alcohol?

“All of these are possible ways of looking at the same data,” Griffin said. By highlighting the brain damage caused by alcohol, Griffin said, Bell is “trying to get us to see these behaviors through a different lens.”