Washington state leads the nation in fetal alcohol research, yet families still struggle to get care

In 1968, researchers at the University of Washington discovered the link between prenatal alcohol exposure and birth defects.

A few years later, two of those researchers coined the term to diagnose the most severe condition within fetal alcohol spectrum disorders: fetal alcohol syndrome.

Since then, Washington state has led the nation in researching and diagnosing fetal alcohol spectrum disorders. It’s something Jes Lawton and his mother, Sara Lawton, have been navigating most of his life.

Sara Lawton and her husband adopted Jes Lawton from a relative. Shortly after he was born, the Washington State Department of Social and Health Services contacted them to see if they wanted to take him into their home.

"We agreed and it took a month of him detoxing in the hospital before we were able to take him home. And it was shocking to us because there was no real prep beforehand," Sara Lawton said. "It was just whatever information we could get from the nurses in the NICU."

Sara Lawton said Jes Lawton cried constantly. He wouldn’t sleep, and he wouldn’t eat. A social worker would come by once a month to check in on Jes Lawton, which Sara Lawton said was helpful.

But that social worker wasn’t able to share a lot of information about what was going on with Jes Lawton's crying and eating. Nurses didn’t really know what was going on either.

"There was a lot of stuff that they knew for short term...about infants and how they cry, and doing timed feedings and things like that," Sara Lawton said. "But a lot of it was, 'Oh, well, he'll probably grow out of it.' And that's not that's not true. The damage that's been done to his brain from the prenatal substance exposure is lifelong."

Jes Lawton's pediatrician wasn't comfortable diagnosing him with a fetal alcohol spectrum disorder. But around the time Jes Lawton turned 3, the family was able to get an appointment at the University of Washington's Fetal Alcohol Syndrome Diagnostic and Prevention Network, one of two clinics in the state equipped to diagnose children with the disorders.

The Lawtons waited 18 months for their appointment. But the answers they got from a suite of experts — a physical therapist, an occupational therapist, a developmental pediatrician and psychologist — made it all worth it, Sara Lawton said.

"It was great, but you never really feel like there's enough time to ask all of the questions," she said. "And then you get all these great suggestions and you're just kind of turned loose. You need therapy, you need mental health care... routines will help. But then you're on your own to figure it out."

Jes Lawton ended up at Hope RISING Clinic. It’s the only treatment center in Washington state for kids ages 3 to 12 with fetal alcohol spectrum disorders or prenatal substance exposure.

The need for fetal alcohol spectrum disorders care services remains high. But as Jes Lawton's experience reveals that they’re in short supply.

A 2018 study published in the medical journal JAMA estimated that up to 1 in 10 children in the United States are affected by a fetal alcohol spectrum disorder. And for Jes Lawton, his time at the Hope RISING Clinic is coming to an end. His mom feels like they’re about to lose a huge safety net.

"Hope RISING Clinic is one of the only places that we've gone that has had a full understanding of my son and what he's going through; where I didn't have to try to explain things [and] didn't have to try to educate the staff on why my kid might be doing what they're doing, or why this behavior is coming out," Sara Lawton said.

The family isn't alone though.

Soundside host Libby Denkmann caught up with Grace Deng, a reporter for The Washington State Standard about the experiences of parents like Sara Lawton, who, along with physicians and lawmakers, are trying to bridge the gap in available care.

Listen to the full interview with Sara Lawton and Grace Deng by clicking "play" on the audio icon above.