When Sara Lawton first brought her baby boy home from the hospital, she wasn’t sure if the endless crying was “normal baby behavior” or an indication of prenatal exposure to alcohol.
Unlike most first-time mothers, Lawton didn’t have months to prepare. Three days after her husband’s relative gave birth, Child Protective Services asked the Lawtons if they wanted the baby. About a month later, they welcomed their new son, Jes Lawton, to their residence in Shoreline.
“We had no idea what we were stepping into,” Lawton said.
Later on, Jes received a fetal alcohol spectrum disorders (FASD) diagnosis. It’s a common yet often misunderstood group of conditions that can happen when a baby is exposed to alcohol before birth — even in the first four to six weeks of pregnancy when people are often unaware they’re pregnant.
FASD has a long list of symptoms: hyperactive and impulsive behavior; learning and emotional disabilities; and problems with the heart, kidney and bones to name just a few.
Nationwide estimates for the number of children affected by FASD are as high as one in 10. Almost 70% of children in foster care in the U.S. are affected.
In Washington, about 70,000 people have FASD, according to the state Health Care Authority.
But only two clinics in the state are equipped to diagnose the disorders: HOPE Rising Clinic and the University of Washington’s Fetal Alcohol Syndrome Diagnostic & Prevention Clinic. The latter clinic provides diagnoses but no treatment. HOPE Rising Clinic is the only treatment center in the state for kids ages 3 to 12 with FASD or prenatal substance exposure.
The clinic was able to serve 131 kids last year. The state Health Care Authority estimates that each year, 870 babies are born with FASD — about 1% of all births.
House Bill 1168, which Gov. Jay Inslee signed in May, provides $2.3 million over two years to help children with FASD and other prenatal substance exposures. Advocates believe it’s the only recent state legislation of its kind in the country. The legislation gives funds to providers and requires the state to increase the number of clinics like HOPE Rising starting in 2025.
Even if HOPE Rising receives funds allocated in the legislation, it will only cover part of the clinic’s current deficit, said Alex Lundy, director of programs at Wonderland Child and Family Services, which runs the clinic.
“The biggest barrier to getting funding for this work has been people not wanting to talk about prenatal substance exposure,” Lundy said. “People are comfortable talking about wanting to support foster kids in foster care. But as soon as we start talking about prenatal substance exposure, we can see people shut down.”
While Jes is today a “sassy 12-year-old,” according to his mom, social issues are difficult for him due to his condition and he struggles with reading and writing at school.
“There’s a lot of information about newborns, but they don’t grow out of it. They just become a tween with FASD, a teenager, an adult,” Sara Lawton said. “So every step you’re going through, you’re a little bit lost.”
But Jes also excels at math. He not only plays soccer and baseball, he’s on the swim team. He likes playing video games on his Xbox and he’s a fan of MrBeast, the YouTube star. He’s also an animal lover whose latest obsession is cows: “He wants a cow real bad,” his mom said.
“You have kids that look like quote-unquote ‘bad kids,’ but their brains are working differently,” she said. “They need more support and understanding.”
Underdiagnosed and misunderstood
There’s growing awareness of the impact of alcohol and drugs on an infant’s development, said Dr. Susan Hemingway, who directs the Washington State FAS Diagnostic & Prevention Network and studies FASD at the University of Washington. FASD was discovered at the University of Washington in 1973 and Washington continues to lead research in the area.
Despite that, Lawton often found herself explaining to nurses and doctors how Jes’ condition works and how it affects his development. It was exhausting, she said.
“I’ve talked to more than one person who thought that kids would outgrow FASD once they’re past infancy,” Lawton said. “These are trained medical people — nurses and doctors — and they’re like, ‘oh, well we just figured they’d get better, because they only talk about it in the medical books as infants.’”
Many people with FASD struggle with the condition at every stage of life.
Sixty-one percent of children with FASD are suspended or expelled from school by age 12, based on an estimate cited in the recently passed state legislation. One study found 60% of adolescents and adults with FASD have had a run-in with the criminal justice system and 35% have been incarcerated. Many develop comorbid mental health conditions.
Researchers in Canada found life expectancy for people with FASD was just 34 years, with suicide, accidents and overdoses all contributing to early death.
While fetal alcohol syndrome — the most severe of the conditions — can sometimes be diagnosed by non-specialists examining facial features, less than 10% of children with FASD present with these symptoms. Evidence shows that while FASD is at least as common as autism spectrum disorder, patients are unlikely to be identified or diagnosed correctly.
Without the noticeable facial features tied to the disorders, it takes an entire team to diagnose a condition under the FASD umbrella because of how many different aspects of development FASD touches. The ideal team has a pediatrician, psychologist, occupational therapist and speech language pathologist, Hemingway said.
While Hemingway said it’s much less common than it used to be, some doctors will still tell parents that they can indulge in a glass of alcohol while pregnant — even though experts say there is no safe amount to drink, because it’s still unclear exactly how FASD works. Hemingway has even studied fraternal twins with completely different outcomes to alcohol exposure.
“Quite frankly, people drink. There’s a lot of babies being born that were, oops, unplanned, and mom’s not an alcoholic and she didn’t know she was pregnant,” Hemingway said, adding that it’s never too late to reduce or stop drinking during pregnancy.
Lundy believes FASD in kids doesn’t get as much attention as conditions related to exposures to drugs like opioids because people find it easier to distance themselves from those who use drugs. While that may be the case, prenatal exposure to alcohol can have more significant and lifelong effects than opioids.
About one in 10 pregnant women report drinking; about one in five reported drinking during the first trimester of pregnancy, according to a study analyzing 2015 to 2018 data from the National Survey on Drug Use and Health.
Stigma can also prevent parents from seeking help.
Lauren Burke, whose 5-year-old son is a patient at HOPE Rising Clinic for prenatal exposure to drugs, said she’s often felt judged by doctors and was once told she didn’t know what she was talking about when it came to her son. Burke stopped using drugs when she found out she was pregnant. She was on methadone, a drug used to treat opioid addiction, when Preston Burke was born.
“There’s so much shame and guilt associated with this,” Burke said. “I can try to compartmentalize this stuff, say OK, ‘Addiction is a disease. I would not have done these things had I not been under the influence. I’d never put Preston in harm’s way.’”
“But it’s still not easy,” Burke added.
‘You’re not in it alone’
At HOPE Rising Clinic, the rooms look the same by design.
“The more that the spaces look similar, the easier it is for kids if they have to transition between rooms,” explained Lundy, the program’s director. “Transitions can be challenging.”
The clinic’s walls are painted light yellow and the space is kept as quiet as possible because some of the kids get overwhelmed by noise. Employees avoid using scented cleaning products when patients sensitive to smell are around.
The center also has a quiet room for patients who are overwhelmed and two physical therapy rooms. Of the center’s 18 staff members, 12 are medical providers. It’s a relatively small operation in an unassuming Bothell business park. But patients come from all over the state, from Vancouver to Bellingham. Sara Lawton called it a “lighthouse in the storm.”
“They might not have all of the answers, but they have some,” Lawton said about the clinic. “You’re not in it alone.”
When Jes was born, there were no specific services in Washington for children with FASD over the age of 3. So when Lawton found out HOPE Rising was opening, she immediately put his name on the waitlist. It took six to eight months to get an appointment — now, new patients wait around nine months to a year.
Hemingway said resources for FASD weren’t always this short. The 1990s, she said, “felt like the decade of FASD awareness.” Back then, there were up to seven FASD clinics in Washington.
House Bill 1168 is the first legislation of its kind since 1995, Hemingway said, when the University of Washington clinic first got its funding. Even now, Washington has more FASD resources than most of the country. The only other state with FASD diagnostic teams is Alaska. But Hemingway said more funding is still needed.
“Remember what we were doing in the 1990s? Let’s do that again. Let’s see what it takes to make that happen,” Hemingway said.
Rep. Tarra Simmons, D-Kitsap, is the chief sponsor of HB 1168. Simmons described it as a “little bill” she wished was larger.
“It’s a start,” she said.
“The reason I became a legislator was because I was tired of working on re-entry and second chances,” added Simmons, a criminal justice reform advocate who was once incarcerated. “I want all kids to have a first chance at life.”
The bill requires the state’s Health Care Authority to recommend resources and support that should be available to children with FASD to the Legislature by June 1 next year. Simmons said she’ll continue work on legislation supporting children with FASD once the recommendations come out.
Lawton’s son, Jes, will age out of HOPE Rising’s services before then.
Jes’ team at the clinic is working on an “exit plan” for him, which Lawton hopes will help smooth the transition. Still, Lawton said she’s worried she’ll have to return to educating doctors and medical providers about her son’s condition.
“We’re not really sure what’s going to happen,” she said.
The FASD world has focused resources on infants because it’s the best window of time to help improve outcomes. But that doesn’t mean people with FASD grow out of needing support.
“As these individuals go through early childhood, adolescence and into adulthood, services get cut off. Not because they don’t need them. Not because people don’t recognize they need them. It’s just the money,” Hemingway said.
“You think it’s hard to get services as a child or adolescent with FASD,” she added, “try getting any level of services of any recognition as an adult.”
by Grace Deng, Washington State Standard
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