By Lauren Fisher
ATHENS, Ohio—Rhonda Edmunds knows just how to bring peace and quiet to a room full of crying babies.
She sways them back and forth in a fluid, gentle motion, careful not to overstimulate their delicate nerves. The lights are dim. Those who enter the nursery are asked to speak softly.
These babies aren’t being coddled. In fact, their bodies are in a near-constant state of discomfort. Young and fragile, they aren’t just being fussy, and Edmunds knows that.
They’re experiencing something no child should ever have to go through: withdrawal.
The children Edmunds cares for all have one thing in common — they were born with neonatal abstinence syndrome, or NAS — a group of conditions that result from a mother’s use of addictive drugs, namely opioids, during pregnancy. Although the symptoms vary case by case, the first weeks of a drug-affected baby’s life are bound to be difficult.
Edmunds is the director of nursing at Lily’s Place, the nation’s first facility dedicated to the rehabilitation of babies born with NAS. Located in Huntington, West Virginia, which has been dubbed the “opioid capital of America,” the need for a facility like Lily’s Place was born of staggering statistics.
This spring, West Virginia Department of Health and Human Resources Cabinet Secretary Bill Crouch said that West Virginia was “in the midst of a child welfare crisis.” In an April news release, he cited the prevalence of NAS as being one of the most pressing issues facing the state.
According to 2017 data from the West Virginia Department of Health and Human Resources, more than 5 percent of children born in the state last year were diagnosed with NAS. The most startling numbers were in Lincoln County, where more than 10 percent of all children born were diagnosed with NAS.
But the statistics are one thing. The nurses who care for these children know the tiny faces behind the numbers all too well.
“There are days that are very challenging,” Edmunds said, “because of course, as nurses, we want to fix things. And whenever you have a baby that is so uncomfortable that it’s very difficult to calm them, that can be challenging.”
Some days are more frustrating than others. A nurse can spend 45 minutes soothing a crying baby, only for the baby’s parents to pay a visit and interrupt. Then it’s back to square one.
The rising need for care
Before Lily’s Place was even a fragment of an idea, Edmunds and her colleague Sarah Murray were working just up the road in the NICU of Cabell Huntington Hospital. As the impact of the opioid epidemic intensified, so did the the hospital’s intake of babies born with NAS.
Before the opening of Lily’s Place in 2014, there was no special unit in the hospital for drug- affected babies— they were simply put with the other infants in the NICU. But the bright lights and constant hustle and bustle of the hospital kept them in a constant state of discomfort.
“So I just felt like we must be missing something.” Edmunds said. “And why are they staying so long? Is there anything we can do for them?”
Looking for answers and new ways to help the infants in her care, she went home to her computer and typed “how to care for drug-addicted babies” into the search bar.
It was in that moment of curiosity that Edmunds learned about the Pediatric Interim Care Center in Kent, Washington. Formed in response to the cocaine epidemic of the early 1990s, the center offered a model that a town like Huntington needed — a standalone facility where babies born dependent on drugs could get the specialized care they needed.
With the highest rate of NAS in the nation — 50.6 of every 1,000 babies born —West Virginia is in a state of crisis.
In 2017, 909 people died of drug overdoses in the state — an all-time high, according to a report from the West Virginia Health Statistics Center. The numbers have been climbing for years. 2014 saw about 629 overdose deaths. That same year, 14 percent of all babies delivered at Cabell-Huntington were born dependent on drugs.
“(It’s) frustration with yourself, not frustration with the baby,” Edmunds said. “You want to help them so badly.
“The whole idea was that, because of the huge amount of drug-affected babies being born, they would be born at the hospital,” Edmunds said. “They would be started on their medication, if necessary, to help them through the withdrawal process, and then they would come to Lily’s Place to finish out that wean of the medication before going home.”
When Lily’s Place began, it had to be considered a pilot program by the state to receive funding. That money, Edmunds said, was to come from the state’s foster care fund, meaning any children who came to Lily’s Place for treatment would have to be in state custody.
The situation wasn’t ideal, Edmunds explained. Although some mothers are deemed unfit to have custody of their children, many are still able and willing to take their babies home after treatment.
“Oftentimes, the babies do go home with the biological parents, but sometimes the biological parents are not in a state of mind that they can care for that baby,” Edmunds said. “So sometimes, family placement has to be determined. Or, if there’s no suitable family members, then, you know, foster care placement.”
It’s no easy task to care for a baby in the throes of drug withdrawal. Parents have to be educated on therapeutic handling techniques. And for nurses such as Edmunds, it can be rewarding — yet often frustrating— work. The babies who come to Lily’s Place are typically born at Cabell-Huntington, where they begin their treatment programs.
Today, most parents are able to sign contracts with managed care companies, which reimburse Lily’s Place for treatment costs. Very few of the babies being cared for at the facility are taken into state custody while still in the hospital. Edmunds, however, fears that some mothers choose not to utilize Lily’s Place because of the misconception that their children will be taken away.
“It’s heartbreaking to see a mom who loves her baby so much,” Edmunds said. “And the addiction is just so powerful that she loses custody of her baby even though she loves her baby.”
An overburdened system
About 80 miles north of Huntington, across the Ohio River and through the rolling hills of Appalachia, Athens County has seen a lower number of opioid overdose deaths compared to many other Appalachian counties. Despite those lower statistics, however, the county has found itself facing another unique facet of the epidemic that has gripped the region.
From 2010 to 2016, Athens County Children Services saw a nearly 23 percent increase in the number of children needing foster care placement. And according to a survey from the Public Children Services Association of Ohio, in 2015, about half of children in state custody came from households where their parents used drugs.
Dumitru Sabaiduc, adoptions department supervisor at the agency is very well aware of this fact. The crisis may be affecting families on a nationwide level, but Sabaiduc and his team know the human toll it can take, not only on children, but also on those who work to ensure their safety.
“We are seeing more and more families being impacted by the opioid crisis,” Sabaiduc said. “Rarely do you see families where substance use is not a problem.”
The presence of drugs in the household creates an unsafe environment for children and state agencies such as Athens County Children Services have a mandatory duty to ensure that standards of safety, permanency and well-being are being met, Sabaiduc said. In some instances, ensuring that level of safety means removing a child from an unsafe situation.
When children are not able to be reunited with their biological parents or relatives, permanent custody falls into the agency’s hands. And while the need for foster homes has surged in Athens County, so has the need for permanent, adoptive families willing to take children in for the long run.
Finding options for permanent placement amid a rising need, however, is often difficult. In 2016, ACCS reported having 36 licensed foster homes, down from 47 in 2010, according to the agency’s 2016 annual report.
And it may come as no surprise that taking young children away from both their parents and their home is no easy task. In many cases, children are being removed from everything they have known, Sabaiduc said, and may be more susceptible to substance abuse themselves.
“When children are taken away from their parents, this is a traumatic event for everyone, including child protective services, Sabaiduc said. “These are hard decisions that we have to make and outweigh the risks of safety for the child.”
Hope amid the dark days
Despite the grim circumstances surrounding the children of Appalachia’s opioid epidemic, there may be hope on the horizon.
Athens County, for instance, was among the first to participate in Ohio START, a program through the State Attorney General’s Office that focuses on sobriety, treatment and reducing trauma. Children in the program are provided with trauma services, and parents receive treatment for their substance use while paired with a mentor to aid them along the way.
“We continue as a child welfare agency to make diligent efforts to ensure children are reunified with their parents,” Sabaiduc said, “but also to find a less restrictive environment for them, such as with relative.”
Back in Huntington, Lily’s Place is preparing to begin its second pilot program, which will open the door for mothers to stay in the facility with their babies for the duration of treatment. Edmunds said the facility wants to always be searching for better ways not only to take care of the babies, but also to care for the families.
Having recognized the growing need for a separate space for babies born with NAS, Cabell- Huntington Hospital opened a special neonatal therapeutic unit, which has grown from a simple nine-bed unit to have space for at least 15 babies at a time.
“It’s very rewarding,” Edmunds said. “Typically, when (the babies) come to us from the hospital, they’re still uncomfortable. Hopefully we’ve had those symptoms captured. By the time they go home, to see them turn that corner and to just be that healthy, alert baby … I mean, they’re not cured when they leave us. But at least they’re to a point where they are no longer so symptomatic that they need that medication to help with those symptoms.”