9 Investigates: Identifying and treating fetal alcohol spectrum disorders

9 Investigates: Identifying and treating fetal alcohol spectrum disorders

Experts say 50 percent of women of childbearing age say they drink, and the Centers for Disease Control and Prevention reports about 50 percent of pregnancies in the U.S. are unplanned.

That means many women, even if only for the first few weeks, expose their unborn babies to alcohol.

Recent research shows fetal alcohol spectrum disorder is more common than previously thought.

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Families who have children with FASD and doctors who treat the children worry the condition doesn’t get enough attention.

"I kind of want to be one of the smallest NBA players ever," Niko Moon told Channel 9, during a checkup at his doctor's office.

Niko is an outdoorsy 12-year-old who dreams big.

He loves his therapy dog, and like most tween-aged children, he has occasional spats with his older sister.

What most people don't know about Niko upon first meeting him is that he lives with FASD, a condition that affects his cognitive abilities.

"I need to remember I'm working on stopping himself," Niko said, describing outbursts of frustration that are characteristic of children with FASD.

Niko and his mom have learned to be patient with one another, like when house rules and chores are forgotten.

"That's part of an FASD," Lea Moon, Niko's mom, told Channel 9. "We don't get angry about that. We don't fuss. We say, 'That's your brain. Let's correct it now and move on.'"

While flipping through the pages of Niko's baby books, Lea Moon said doctors warned her and her husband that Niko was at high risk of FASD when they flew to Russia to begin adoption proceedings in 2008.

"I didn't care because I was already in love," Lea Moon said, pointing to a baby photo of Niko.

"I don't tell people Niko was adopted when we say he has fetal alcohol syndrome, because it doesn't matter," Lea Moon continued. "What matters is he has tremendous potential if we can get the right resources for him."

The search for the best possible treatment led the Moon family to Dr. Yasmin Senturias, director of Atrium Health's Developmental and Behavioral Pediatrics of the Carolinas. It's the one of only two clinics in North Carolina that specialize in FASD.

"Niko lives it every day," Senturias said. "He's known the challenges. But his parents have been all the way supportive of him, and so instead of him feeling defeated by these challenges, he's actually felt strong."

Senturias told Channel 9 that FASD patients have three neuro-behavioral challenges: self-regulatory functions, or ability to regulate mood or behavior; neuro-cognitive problems, including lower IQs and difficulty following instructions; and adaptive abilities, such as understanding social cues.

“We need to be identifying this disorder more,” Senturias said.

Researchers are working on that at the University of North Carolina's Nutrition Research Institute in Kannapolis.

Every day, researchers in Dr. Susan Smith's lab at UNCNRI are working to understand the effects of prenatal alcohol exposure.

In her research, Cecilia Kwan found that a mother's alcohol use reduces the placenta's ability to deliver nutrients to her baby.

“So in other words, the baby is basically starving,” Kwan said.

Knowing prenatal alcohol exposure is an unfortunate reality, researcher Kaylee Hefrick is figuring out how to reverse its effects.

“An iron-supplemented diet, it can basically reverse some of the iron deficiency, especially in the brain,” Hefrick said.

One study co-led by UNCNRI's Dr. Philip May was published in 2018 in the prestigious Journal of the American Medical Association.

Researchers collected data on 6,639 first-graders across the country. Of 222 children diagnosed with FASD in the study, only two had been previously diagnosed.

That begs the question: Why are so few children diagnosed?

Senturias said some mothers don't tell doctors they drank, and some medical professionals hesitate to discuss FASD.

“There is a fear that you will make a mother guilty, that you will make anyone guilty for something they've already done that they can't undo,” Senturias said.

Senturias stresses that FASD is 100 percent preventable.

Despite misinformation passed along by peers and through online content, Senturias said expecting mothers should avoid drinking alcohol. She's frustrated with poorly informed recommendations women hear that the occasional glass of wine or other small amounts of alcohol are safe.

"We do not know a safe amount or a safe time for alcohol to be consumed during pregnancy, and that is including the period of time when you still don't know (you're pregnant)," Senturias said.

Women should feel empowered to tell their doctors if they've consumed alcohol during pregnancy, so they can do anything possible to protect the unborn child, Senturias said.

"Let's keep your nutrition tip top," Senturias said, explaining her advice to pregnant women who have consumed alcohol. "We're going to talk about maybe choline supplementation for pregnant women."

"There are things you can do to make for the best possible outcome," she added.

Lea Moon thinks children with FASD are often misunderstood, accused by adults in their life of behaving badly instead of getting treatment.

“Let's call it what it is and address it,” she said.

Given Niko's success, the Moon family hopes to empower others.

“I just want to help a kid out,” Niko said. “I don't want him to go through a lot of things I had to go through before I had the help that I got.”

Among a long list of changes in education, government and health care systems, Senturias believes there needs to be better education about birth control and effective family planning to prevent unplanned pregnancies among women who drink.

"All of these have to be addressed together, and it takes physicians and practitioners who are mindful of all of these issues," Senturias said. "Love can be there, but without the understanding we can't get to where we need to go."