Harmed before birth, America's 'lost children' overshadowed by opioid crisis

“They’re the lost children,” said Carl Young, a North Dakota activist and candidate for the state legislature, who has spent the last 18 years seeking help for his adoptive son with fetal alcohol syndrome.

“Nobody knows what happens to them,” Young said in an interview in North Dakota, one of the states hardest hit by fetal alcohol syndrome and alcoholism.

President Donald Trump has made the opioid crisis a signature feature of his presidency, and it’s likely to figure into his reelection campaign. With bipartisan support, he has boosted treatment, research and prevention, including directing millions to help babies exposed to narcotics in the womb.

There’s been no similar help or attention from Washington to pregnant women who abuse alcohol, or to the children impacted by fetal alcohol syndrome. Still, one in nine pregnant women consume alcohol, according to a recent CDC study. Of that group, one third reported binge drinking.

Public health officials cite numerous reasons for American’s forgotten addiction crisis, including the intense stigma around expectant mothers who drink, as well as the fact that alcohol itself is legal, socially acceptable and widely used.

There’s no adequate treatment for fetal alcohol syndrome; there’s not even a consensus among doctors on how to diagnose a irreversible condition that’s almost certainly underreported.

The federal government estimates tens of millions of children and adults have lifelong impairment from fetal alcohol syndrome or fetal alcohol spectrum disorder — the range of conditions caused by prenatal alcohol exposure. The cost of health care, disabilities services, special education and related programs hits $4 billion a year, according to the CDC.

And that doesn’t cover the cost of prisons and jails, which is where a lot of people with FAS end up.

Carl Young's son Marc is one of them.

Marc Young has been jailed three times since his 18th birthday last July and was homeless for most of last year. He spent much of his childhood in treatment centers, often far from home, and he struggles with developmental disabilities, aggressive behavior and mental health challenges.

Unlike the high profile attempts to address opioids, fetal alcohol syndrome and the broader issue of alcoholism have few champions on or off Capitol Hill. Bipartisan legislation introduced by Sens. Amy Klobuchar (D-Minn.) who has talked of her own father’s alcoholism as she campaigns for the Democratic presidential nomination, and Republican Lisa Murkowski (R-Alaska) has not gained traction in a Congress with competing priorities and a truncated election year schedule.

Trump himself is a noted teetotaler — his brother suffered from alcoholism and died at 42 — but his administration has not made a priority of alcoholism, which kills 80,000 people a year. His budget for the coming fiscal year cut the already limited federal spending.

Programs for fetal alcohol syndrome get about $30 million a year in federal funding, mostly for research. Trump’s fiscal 2021 budget proposal released this month slashes the National Institute on Alcoholism and Alcohol Abuse — the main agency doing research on alcohol addiction and fetal alcohol syndrome by 10 percent. Congress is unlikely to approve that cut.

But the financial pressures began before Trump. The Obama administration in 2015 quietly gutted a small federal program overseen by the Substance Abuse and Mental Health Services Administration that helped individuals and families affected by fetal alcohol syndrome. A spokesperson for the agency, known as SAMHSA, said the issue is no longer in its purview.

“They didn’t have enough advocacy to save that program,” a former SAMHSA official said. “The population sort of fell in between the cracks.”

Fetal alcohol syndrome used to be more of a priority. The surgeon general in 2006 issued a public advisory highlighting the risk of drinking alcohol during pregnancy. The government and medical community still warn against alcohol consumption for expectant mothers, but there’s little being done about the children who are already damaged.

No major, well-funded advocacy group has emerged to drive change the way groups do for other disabilities and diseases. For instance, Autism Speaks had a $50 million-plus budget in 2018, and pushed for a $1.8 billion boost in research funding that Trump signed into law last fall.

An annual meeting of the National Organization on Fetal Alcohol Syndrome last September was a small affair by Washington standards. Gathered in a cramped room in a basement of an old Washington hotel, about two dozen advocates — many parents of kids with fetal alcohol syndrome — discussed big ideas like asking the U.S. surgeon general to issue a call to action, or launching a class action lawsuit with injured families in the same vein as the massive opioid litigation. But Tom Donaldson, the organization's executive director, acknowledged that it’s an uphill battle.

“It’s a huge problem for our society and unless you’re living it, nobody has a clue,” said Gigi Davidson, president and founder of FASD Communities, another nonprofit national advocacy group, whose son was also exposed to alcohol during his birth mother’s pregnancy.

The problem is widespread. A federal study in 2018 found the range of conditions stemming from exposure to alcohol in the womb affects somewhere between 1 and 5 percent of U.S. children. Researchers say the prevalence is likely higher because the criteria used to diagnose FAS is outdated and potentially misses many cases.

Clinicians generally look for facial abnormalities like a thin upper lip and underdeveloped ears to detect FAS. But researchers now know that facial abnormalities don’t appear in all affected children, and are only linked to alcohol exposure in the first trimester of pregnancy. Marc for instance doesn’t have those hallmark traits; and he was exposed to both alcohol and drugs at different stages of his birth mother’s pregnancy.

Charles Koob, director of the National Institute of Alcohol Abuse and Alcoholism, said researchers are trying to develop new criteria and neurobehavioral screening tools to detect FAS, with an emphasis on early intervention. Work is being done on developing 3D ultrasounds that could detect alcohol exposure in utero, or on blood biomarkers to measure exposure. But none are ready for prime time.

Marc, who has shared his story with POLITICO by phone and text messages, knows he’s “always going to be stuck with it” and wants to get help, when and where he can find it. “If you stick on your own,” he said in one recent phone call, “I kind of think that’s how it gets worse.”

The Young family spent years trying to find the right care for Marc, who showed signs of FAS early on but didn’t receive a diagnosis until he was 16. Finding help was especially challenging in rural North Dakota, where a dismally small number of mental health specialists and treatment centers exacerbate the lack of education and awareness about fetal alcohol syndrome. And because Marc doesn’t fit the standard criteria for FAS, he did not qualify for state disability services and supports.

In North Dakota, which has one of the highest FAS prevalence rates and a high rate of binge drinking among pregnant women, having FAS doesn’t automatically unlock benefits for disability services. Children are required to have an IQ of 75 or lower to qualify. Those like Marc, whose IQ hovers above that threshold, can’t tap into services available to their peers without disabilities.

Like many with FAS, Marc does best in settings that provided structure and round the clock staffing. When he is discharged, he tends to struggle without those robust supports. When he lived with his parents, he would hoard food or steal money. Sometimes he became violent.

“We lived with locks on everything,” said his dad. “Our food pantry had a lock. The freezer had a lock ... Because he would either steal food or he would steal knives.”

Sometimes, clinicians just told him to call the police or dial 911 if Marc acted out. His parents worry that without the right support, Marc will end up in back prison, which often serves as a de facto warehouse for people failed by the U.S. health care system.

A recent study published in BMC Public Health found as much as 35 percent of the prison population in Canada had fetal alcohol exposure. There is no recent, comparable U.S. study, but federal officials say individuals with FAS are commonly found in the criminal justice system.

Carl says his greatest hope is that Marc will find the community-based supports he needs to avoid spending his life in a treatment facility, institution or jail. “What that will look like, I don’t know,” Carl Young said in a recent interview in Bismarck. “I’ve never seen that level of support for people.”

On top of that, there is little, if any, help or support for families with children or teenagers with FAS.

“There’s no money for families and there’s not enough help professionally for us — families or the child,” said Jeff Holt, who is raising his grandson, Marcus, with FAS in Grand Forks, North Dakota. “The more rural we are, the less help there is.”

Holt and his wife, Nancy, became Marcus’ guardians after his mother died when he was 18-months-old. Marcus’s father, Jeff Holt’s son, is incarcerated.

“When we got this child, he was in a dirty onesie,” Holt recalled. “Social services called and said we’ve got your grandson. Do you want him?”

Marcus, who, like Marc, does not have the telltale facial abnormalities, showed early signs of developmental and intellectual disabilities, but didn’t receive an FAS diagnosis until he was eight. Now, he sees therapists and doctors multiple times each week to manage his symptoms. He’s hyperactive, has trouble focusing and retaining information and struggles with learning right from wrong, his grandfather said. Marcus has Medicaid but Holt said it can be challenging to find providers that accept that coverage.

“There are some things with Marcus I don’t think will ever change. Some things he is getting better at. But we do know that he’ll need a guardian for the rest of his life. He’ll need someone to manage his money and everything,” said Holt. Marcus is 11 now, and his grandfather expects that “sometime down the road he’ll probably get mixed up in law enforcement.”

The few pockets of progress across the country are mostly driven by desperate parents, not government. Carl Young is working with Valerie Meyers, a therapist based in Bismarck, to set up a day treatment center for kids with FAS whose parents work and may need somewhere to send their children if they’re having problems in school.

“There aren’t enough services. Parents are having to quit their jobs. We see adults that have to stay at home with their kid because they can’t go to school or got kicked out of every daycare in the community. It’s so sad,” Meyers said. “We only have eight (treatment) beds in our state for children under 10, so then what?”

Meanwhile, a significant percentage of children with FAS grow up in foster care, according to the National Organization on Fetal Alcohol Syndrome, since many of their mothers struggle with addiction. Most of these kids will never receive treatment — and those who do tend to lose supports when they reach adulthood.

“Once they turn 18, they fall off a cliff. There’s nothing available,” said Davidson of FASD Communities, who founded Aloha Communities Platteville in Wisconsin the first known group home in the U.S. for adults with FAS. It currently has four female adults with FAS living there, three full time staff — and a waiting list.

“It can serve as their forever home or for some, or to get them competent enough to live on their own,” though she acknowledged not all residents would achieve that independence. She is working with groups in New York and Nevada to replicate the concept, which so far has been funded by donations and grants.

On the prevention side, experts want to see investment in education and awareness campaigns around alcohol and pregnancy. The American Academy of Pediatrics in 2015 for the first time warned that no amount of alcohol is safe to consume while pregnant.

Larry Burd, director of the North Dakota Fetal Alcohol Syndrome Center at the University of North Dakota, has advocated for more screening of pregnant women and says medical school should include more in the curriculum — and not just for future obstetricians.

“We had a significant problem with prenatal care providers even asking about alcohol,” Burd said.

Tina Feigitsch, the Claims & Eligibility Administrator for the North Dakota Health Department’s Division of Special Health Services, said there’s so much stigma around drinking and pregnancy that women are afraid to seek help.

“If there could be some safe places for them to talk and open up,” she said, “eventually I think it could get better."

This story was produced with the support of the Fund for Journalism on Child Well-Being, a program of the USC Annenberg School of Journalism's Center for Health Journalism.

[This article was originally published by POLITICO.]