Kris Rife adopted her son as a baby more 20 years ago but didn’t find out until he was 14 that he had probably been exposed to alcohol in his birth mother’s womb.
In retrospect, the diagnosis of a fetal alcohol spectrum disorder made sense, she said. His fifth-grade teacher suspected he might suffer from fetal alcohol exposure. But Rife shrugged off the teacher’s concerns. Her son had none of the distinct facial features associated with fetal alcohol syndrome, such as a flat nose bridge or a thin upper lip. His doctors didn’t think he was at risk.
But he did struggle behaviorally and developmentally. He had trouble remembering things and controlling his temper, grasping concepts involving space and time. He would forget to think through what he said before he said it. That’s why Rife and her husband, who live in Mount Pleasant, thought their son might have autism.
Then, during an autism evaluation at the University of Utah, a birth defects expert noticed that his head was a little small, which is another, more subtle sign of fetal alcohol exposure.
That expert also noted that Rife’s son, a teenager at that point, was very personable, even among strangers, a personality trait at odds with some autism spectrum disorders. All of those clues informed the final diagnosis.
“It was horrible,” Rife said. “They’re still babies at 14.”
Nearly a decade after her son’s diagnosis, Rife now pours her time and energy into advocacy. She is trying to raise awareness about the dangers of fetal alcohol exposure through the S.C. Fetal Alcohol Spectrum Disorders Collaborative, an undertaking made more difficult by the fact that the state government invests little money to address the problem. One state employee at the Department of Disabilities and Special Needs spends about 15 percent of her time working on fetal alcohol spectrum disorders, Rife said. She thinks the issue deserves more attention.
“When people think it’s not a big problem, it’s because it’s not recognized,” she said.
Rife specifically wants to sound a call to women that no amount of alcohol is known to be safe during pregnancy. But she conceded that her message is different from the advice of some doctors who assure their pregnant patients an occasional drink won’t harm their babies.
“It is very frustrating,” Rife said. “There is not the science that says you cannot have one drink during pregnancy. You can’t prove that. But we can tell you that you might have a problem with a child if you have one drink. Do you want to take that risk?”
Last year, leaders at the Centers for Disease Control and Prevention posed the same question.
The agency told health care providers that they should warn their patients of child-bearing age “not to drink at all if she is pregnant, trying to get pregnant or sexually active and not using birth control.”
Agency officials explained that most women expose their unborn children to alcohol in the womb before they even realize they are pregnant. Nearly half of all pregnancies in the United States are unplanned each year. Often, when a woman first finds out she is pregnant, the damage has already been done.
But unanticipated backlash to the CDC advisory was intense. One critic, in Time, called the recommendation a “scare tactic” and accused the CDC of prioritizing an unborn fetus over a “woman’s right to her own body.” Professors from Harvard and Yale wrote in the Boston Globe that the agency’s advisory “damages its credibility as a source of clear, balanced advice about health risks.”
Scientists will never be able to study fetal alcohol exposure in a randomized, controlled clinical trial, the industry’s gold standard, because such a study would be unethical, she said.
“What we’re kind of left with is looking at studies that do demonstrate very clearly that there is risk associated with alcohol use in pregnancy,” she said.
The general public may not realize fetal alcohol spectrum disorders are so problematic and so prevalent because the majority of cases are never diagnosed, Guille said. And most people who suffer from one of these disorders do not have any of the distinct facial features associated with fetal alcohol syndrome, she said.
The American Academy of Pediatrics estimates that fetal alcohol spectrum disorders may affect up to 4.8 percent of all children. And Guille cited studies that have shown, for example, the rates of these disorders are quite common among prisoners.
“The impact goes well beyond the individual,” she said. “This has a big impact on our society as well.”
September is Fetal Alcohol Spectrum Disorders Awareness Month.
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