In the rear of the Cabell Huntington Hospital maternity ward is a medium-sized, unlit room. Occasionally, its darkness is pierced with a scream that nurses can only describe as a kind of cat call.
The patients inside suffer from seizures and are hyper-sensitive to bright light. Sometimes, their bodies cramp, stiffening like a board. Other times, they’re fidgety. And the thumb sucking… it’s never ending — unusual, even for newborns.
These babies are the youngest victims of America’s heroin problem. Exposed to opiates while still in the womb, they suffer from Neonatal Abstinence Syndrome, or NAS.
In the U.S., the number of babies born with NAS increased by more than 300 percent between 1999 and 2013, according to a report released in 2016 by the Centers for Disease Control. In Huntington, W.V., the problem is exponentially worse. CDC findings reveal nearly 33 cases of NAS per 1,000 hospital births — the highest in the nation. But anecdotally, Cabell Hospital nurses report witnessing more than 100 per 1,000 babies, nearly 16 times the national average.
To be clear, these babies are not born addicted to opiates. Rather, their brains were exposed to opioids in utero, damaging how they’re formed and similar to how alcohol affects brain development in children born with Fetal Alcohol Syndrome.
It’s well documented how FAS impairs childhood development. In sharp contrast, medical professionals have been able to recognize the symptoms and diagnose NAS for decades, but they continue to be perplexed by what happens to these newborns as they age. Many doctors and nurses say they simply don’t know.
“We have so many babies that are being born prenatally exposed to illegal drugs. That’s been a well-documented problem in our community and in our region,” says Robert Hansen, director of addiction services at Marshall University in Huntington. “The question becomes what’s happening to these babies after they withdraw from those drugs, and what’s going to happen with their moms? What’s going to happen to the children as they grow and develop and enter the school system?”
Where Huntington sees a crisis, it also sees a solution. As community leaders do their best to mitigate the opioid epidemic that has gripped their city, members of the medical community and local university are partnering together to care for these newborns by launching the first-of-its-kind childcare program to study the long-term effects of NAS. The hope is that their findings will be used to inform future educational initiatives.
AN END TO THE SUFFERING
The reason why Huntington has such a high number of babies born with NAS is largely due to its location. The city straddles three state lines — Kentucky, West Virginia and Ohio — and has one of the only large hospitals in the region. Mothers are more likely to give birth there than anywhere else in the area.
Two years ago, the CDC released a report revealing that women aged 15 to 44 were filling opiate prescriptions at a higher rate than normal. Because of the opioid epidemic in this part of Appalachia, Cabell Huntington Hospital is overrun with drug-exposed babies.
There’s just not enough beds, says Sara Murray, nurse manager in the Neonatal Intensive Therapeutic Unit at Cabell Huntington Hospital. Her unit only has 15 beds, but during the first week of November 2017, nurses were caring for 19 babies with another expected at any moment.
Newborns with NAS remain in the hospital longer — up to 100 days, compared to three to four days with other babies — making overflow inevitable. The extended hospitalization got Murray thinking.
“They were staying for long periods of time, and we just felt like there was something that must be missing in caring for them, thus causing them to stay so long,” Murray says.
In response, Murray and two coworkers, Rhonda Edmunds and Rebecca Crowder, opened Lily’s Place, a NAS clinic that would serve as overflow for the hospital.
Lily’s Place is only the second facility in the U.S. that exclusively cares for NAS babies. It’s modeled after a program in Kent, Wash., that, according to Edmunds, “needed to also be in Huntington.” Since opening in 2014, the facility has cared for more than 300 babies. First Lady Melania Trump and other influential politicians have said that the unique program should be a model for the entire nation.
The care provided to newborns at Lily’s Place mirrors what they’d receive at the hospital. To ease withdrawal symptoms, nurses rely on methadone, an opioid that satisfies the physical cravings of opiate dependency, but doesn’t provide the high that heroin or prescription painkillers do.
Though methadone has been controversial for adults in recovery — many view it as a substitute for another drug — treating newborns with methadone is widely accepted within neonatal units.
“Any parent will tell you in here that withdrawal is very painful,” says Sarah Murray, who runs the Neonatal Intensive Therapeutic Unit at Cabell County Hospital. “We don’t want the babies to suffer that pain, so we get them through the acute withdrawal.”
By the time each infant goes home from Lily’s Place, it’s been weaned off all opioids, including methadone.
Despite its success in providing overflow for the hospital and counseling and caregiving services to parents of babies with NAS, Lily’s Place faces tremendous difficulties. Funding is a continual problem. The majority of women who give birth to opioid-exposed babies are on Medicaid. With national healthcare on unstable ground, public and private donors could be needed in the future to finance the cost of treating a newborn with NAS, which carries a price tag of more than $60,000, according to the National Institute of Drug Abuse.
Because of health insurance and Medicaid complexities, Lily’s Place can only accept babies born to West Virginia residents; those born to mothers from out of state cannot be transferred from Cabell Huntington Hospital to Lily’s Place. For now, the hospital’s maternity ward continues to be overrun.
The clinic has tried to solve this by offering other states guidance on how to open up similar programs, but there have been no successful takers, as of yet.
A STEP INTO THE UNKNOWN
The long-term effects of opioids on the babies that leave Lily’s Place or the hospital is anyone’s guess.
“There needs to be a lot more research done about what the children need. That start[s] out with neonatal abstinence syndrome, and really, across the country, there hasn’t been enough research to answer that, so it’s very variable,” Marshall University’s Hansen says. “Some children who start out with NAS may not need much support and services. Others will need different [things]. We just don’t know yet.”
In January 2017, Hansen reached out to Suzi Brodof, owner of a shuttered daycare facility, to discuss what to do about Huntington’s newfound fame as America’s heroin capital.
More specifically, he wanted to talk about babies with NAS.
“I went to a meeting and there were about 30 other people from all different organizations in the community. We all wanted to help because we were concerned about what was going to happen to all these babies that are being born to moms who are addicted,” Brodof says. “Everyone went around and said what they could offer. When it got to me, I said that I have a building that was built to be a childcare center, and if we want to still use it in some way for children, I’m willing to contribute that to the cause.”
Brodof had contemplated turning her building into an office complex, but stopped due to the fact that everything inside was miniaturized.
“We didn’t want to just convert it to some other use if we could use it for something for children,” she says.
Educators estimate that 500 students with NAS will be entering the school system in Huntington alone, but didn’t provide proof of that number. “The concern is that the teachers are not prepared,” Brodof says. “They don’t know what to expect or how to handle them.”
That’s where Brodof’s new childcare facility, River Valley Cares, steps in. The childcare center, which opens this year, is studying NAS children in a controlled environment in conjunction with researchers from Marshall University. One nursery room, for example, has a two-way mirror that researchers can use to observe child interactions without intruding.
The hope is that the program will provide the first-of-its-kind research on how toddlers with NAS interact with other students and how they work in learning environments.
If successful — and it will likely take years to conduct the research — River Valley Cares will be able to give teachers, parents and educators the tools needed to figure out how to manage children with NAS.
A PERSONAL SOLUTION
Ryan Navy, a 26-year-old pastor, adopted a baby boy with NAS after a parishioner in his church, New Heights, relapsed on heroin.
“She was clean for, I think, two years. She was doing well,” Navy tells NationSwell. “Three or four weeks before this baby was supposed to be born, she relapses and started shooting up heroin again.”
This story isn’t uncommon in Huntington. But neither are the examples of city residents demonstrating their belief that it takes a village to raise a child — especially when those children are afflicted with NAS. In many instances, mothers can’t manage a newborn while going through opioid withdrawal themselves and the baby ends up in foster care.
Navy’s New Heights congregation is well known for fostering NAS children. The church has about 18 foster families, Navy says, and a fellow pastor has adopted “two or three kids.”
“I can’t even keep track anymore,” Navy says with a laugh.
The good that results from this village mentality extends far beyond Huntington’s newborns. When Brodof went to that first meeting with Hansen, she immediately recognized the benefit of the community banding together.
“Until we all came together last January, none of us really were interacting,” she says. “We were all doing good things for children and families, but we realized once we all came to the table that we would be able to be much stronger if we worked together.”
Additional reporting by Kayle Hope
Correction: A previous version of this article stated that bright light causes babies with neonatal abstinence syndrome to have seizures. A previous version of the video stated a factual error regarding medical information. NationSwell apologizes for the errors.