Saving the babies of the opioid epidemic
On bad days, five new babies are born in withdrawal from opioids at Cabell County-Huntington Hospital in southern West Virginia. In the neonatal therapeutic unit, there are zero unoccupied beds, but staff can't turn the infants away. On one week in mid-August, the unit held 27 newborn babies in a space designed for 15.
The trademark hum and ding of monitors and alarms are absent from this neonatal unit. That's by design — those noises overstimulate babies born addicted to opioids and going through withdrawal. When the babies cry, nurses don't bounce them; they sway from side to side. They don't smile at them – that's overwhelming, too. To soothe the babies, who cramp and shudder, nurses slowly turn them to face a muted gray wall. They keep the lights low and, over the course of days or weeks, taper doses of the drugs until the babies are healthy and need no more.
Each year, this hospital delivers roughly 2,900 babies from West Virginia, Kentucky and Ohio. Of those babies, one-fifth were exposed to controlled substances during pregnancy, and as many as 400 babies require medication for withdrawal. Sara Murray opened the neonatal unit five years ago to meet that demand.
Each child who enters her unit has been diagnosed at birth with neonatal abstinence syndrome, a term used to describe the group of problems that occur in babies born exposed to addictive opiate drugs, and which can result in a lifetime of developmental delays. Each child is referred to Child Protective Services, an agency bloated with hundreds of new foster cases fueled by the opioid crisis from across the state in the last year alone.
AT THE CROSSROADS
Amy Harrison found out she was pregnant after her husband, angry and desperate for drug money, kicked her and broke two of her ribs. Hospital staff enrolled her in a drug recovery program for pregnant women. Harrison's ribs, they told her, would have to mend on their own.
At 26, Harrison had already overdosed on heroin five times and lost custody of her three children. Now, she was expecting a fourth child, due Oct. 27. This time, she hoped, would be different.
Two days after the positive pregnancy test at the hospital, she left her husband and moved in with her grandparents. Five months after that, her husband fatally overdosed on a mix of heroin and fentanyl in a truck in the Huntington DMV parking lot. He was 33.
Harrison had tried to quit heroin twice before, but rehab and jail didn't work, she said. That's not uncommon. More than 60 percent of people who receive treatment for substance use relapse within the first year. But Harrison so far has stuck with the recovery program this time, since her pregnancy was confirmed seven months ago. Every day, she takes 4 milligrams of Subutex, and every Wednesday at 9 a.m., she joins a dozen other expectant mothers in drug recovery for an hour of group counseling. Guest speakers educate the women about how to manage their health to avoid relapse, how to administer naloxone if they see someone overdose and how to care for an infant withdrawing from drugs.
At eight months pregnant, Harrison's belly has quickly swollen round with her growing son. He is active, she says, kicking her ribs and waking her up in the night. She says hello to him and earns points through an addiction recovery group toward a second-hand crib so he will have a place to sleep when she brings him home to her sparsely furnished apartment. But she's anxious about giving birth to the son she's already named — Wyatt.
A fifth of babies born in Cabell-Huntington Hospital in West Virginia are prenatally exposed to drugs, usually opioids. When Wyatt is born, he will be one of them.
Doctors and nurses will observe Wyatt for about five days to see if he displays signs of withdrawal from opioids. If he does, as three-quarters of the babies born to mothers in this drug recovery program do, he will be admitted to Sara Murray's seven-room unit. Babies usually spend four weeks in the unit, as nurses try to offer them comfort through the tremors, fevers and seizures. But some babies have stayed for as long as 100 days. How long they stay depends largely on how well their mothers stuck to recovery during pregnancy. The longer moms have been in recovery, the better the outcomes for the babies.
When asked if she carries guilt over the baby's exposure, Harrison says she tries to stay positive, that she doesn't like to dwell on the past. She'll be dealing with her drug use for the rest of her life, she says.
And if her son does land in the neonatal unit, Harrison says she'll visit him every day. "In the end, he'll be better," she said.
In Room 3500 of Cabell-Huntington Hospital's neonatal therapeutic unit, three young mothers wear hospital gowns and sit in glider chairs, each next to her newborn child's crib. The room is windowless, the only light comes from a standing lamp in one corner and a fluorescent bulb shining above a sink in the other. A new mother and father struggle with an on-duty nurse to negotiate the straps on their tiny son's carseat. He'd been in the unit for more than a month; today he goes home. A second mother steps out for a smoke. A third awkwardly holds her son's formula bottle against his mouth, trying to find the right angle as her newborn pushes away the nipple with his thrusting tongue — a symptom of neonatal abstinence syndrome.
"He's not tremoring like he used to," the second mother says to the third, with encouragement.
Across the hallway, Sara Murray, draped in a pale blue hospital gown, feeds a one-month-old baby boy two ounces of formula. He'd been swaddled in a blue blanket to protect his tiny body against a wave of tremors. His body is stiff as a board. Next to him, beside a preemie-sized diaper, rest two syringes — one with a dose of methadone to ease his opioid cravings and the other with a dose of clonidine to soothe muscle cramps and aches. Two more babies share the room with him. All are here because their mothers tested positive for drugs in their bodies at the time of delivery.
Cabell-Huntington Hospital is one of a small but growing number of hospitals nationwide that conduct universal screening to treat infant substance withdrawal.
Murray, 62, picks up the methadone and gives the baby his oral dose. At first taste, he fusses, but soon the medication should relieve the baby's cramping abdomen, diarrhea, fever and rigid muscles. When withdrawal grips babies, they release piercing, painful wails that the unit's volunteer cuddlers compare to a cat's call. Nurses administer just enough medicine to offer these babies comfort. Then they record each baby's Finnegan score, which measures an infant's progress along a 12-step weaning protocol developed by Philadelphia physician Loretta Finnegan in the 1970s. She designed the system partly to encourage regular monitoring throughout the day, rather than occasional medical checks. Today, this system is the most widely used means of gauging progress. At Cabell-Huntington, nurses keep score sheets next to each baby's crib so parents know how their child is doing. When they call, parents often ask for the baby's score before they ask if the child ate, Murray said.
While patting the baby boy's bum to coax a burp, Murray glances at a crib across the room, where a baby girl begins to arch her back, a sign of gabapentin exposure in utero. The unit's nurses watch the babies to see if their movements offer clues about what substances their parents were exposed to, especially if parents aren't forthcoming or do not know what combinations of drugs they consumed, Murray said. She recalled a baby for whom no weaning protocol worked. The baby's mother insisted she only took heroin while pregnant. Murray told her to ask her drug dealer what he sold her. The mother later returned to Murray, shocked to find out that instead of heroin, she bought fentanyl mixed with gabapentin, a prescription drug typically used to help epilepsy patients combat seizures.
Women who take opioids while pregnant aren't always struggling with addiction or undergoing treatment. Sometimes, their doctors prescribe it to them. In 2014, researchers estimated as many one-fifth of U.S. women filled an opioid prescription during pregnancy, a tapering trend but one that still carries the risk of developing an addiction.
Things have changed since Murray's unit opened five years ago, back when the babies she treated were usually exposed to either Subutex or methadone, substances their mothers took as part of their drug treatment. Today, with heroin, fentanyl and gabapentin sweeping Huntington, these drugs also have shown up in the babies Murray weans. It's more difficult to wean babies from these substances, which more than half of the time are combined with other drugs, complicating an infant's treatment and prolonging its withdrawal.
"They're one step ahead of us all the time," she said. "They don't realize everything they put in their body affects their baby."
Murray said she cares for the parents, too, particularly the mothers. She teaches them how to hold, feed and raise the baby. She grows attached to the mothers with no support system, many of whom never had parental role models of their own. For parents who live far away, Murray invites them to stay the night with their baby in the unit, so they know what a sleepless night with a newborn feels like. She reminds them that no baby ever died from crying. When doctors discharge a baby from her unit, Murray tells the parents to call her if they ever feel they are in over their heads. She tells mothers if they ever think they might do something they will later regret, to put the baby down, close the door and call 9-1-1.
"Any mother is at risk for being overwhelmed," Murray said. "They're at a greater risk of being overwhelmed."
But sometimes the uncertainty weighs on her. She sees some parents walk into the unit unwashed and antsy. They jump from program to program to pick up medication for addiction treatment but avoid counseling because they "don't want to get better," Murray said. During the five weeks one family's infant received treatment in the unit, Murray recalled, the baby's parents were kicked out of three different treatment programs. Recently, doctors had discharged a premature baby after eight days in the unit because it had no symptoms of withdrawal (premature babies usually don't display severe signs of withdrawal compared to full-term babies). Murray feared for the child because the mother tried to sell her doses of Subutex on the street and "was nowhere near being ready to take care of the baby."
So Murray contacted the hospital's social worker, who then contacted that mother's social worker. Together, they crafted a protection plan that outlined that mother's support network. When the mother left the hospital, the baby's grandmother was with her. The hope was that the grandmother could help care for the baby and keep the mother focused on her recovery.
'HELPING THE PARENT HELPS THE BABY'
The most important indicator for a baby's success, in Murray's experience, is its home. A baby in a loving, stable and sober home is most likely to thrive, she said. And a mother with a strong support system is most likely to be able to maintain a supportive home environment.
"Helping the parent helps the baby," she said.
But in the United States, physicians have paid too little postpartum attention to women in drug recovery who must ward off relapse while learning how to raise a child, said Mishka Terplan with the American Congress of Obstetricians and Gynecologists, who said he thinks that must change. Heightened risk of postpartum depression could lead to relapse, Terplan said: "We provide all the support up until the point where people really need it."
Nora Volkow, of the National Institute for Drug Abuse, said many communities simply don't have standard procedures in place to care for these babies. But she said it's vital to offer treatment to pregnant women and then continue that support for a few years after a child's birth, saying the long-term savings are worth the high cost of the upfront investment. Without sustained treatment for these mothers, Volkow said their lives and the lives of their babies are jeopardized: "The problem is not going to end the moment the baby is born."
In West Virginia, hospitals did not effectively track incidents of neonatal abstinence syndrome before October 2016, said Rahul Gupta, the state's public health commissioner. That meant that many babies with neonatal abstinence syndrome fell through the cracks. But starting this time last year, the state began to mandate that nurses collect birth score data before babies are discharged from hospitals. These electronic health records not only allow public health officials to track trends in prenatal drug exposure, but also give pediatricians clues about a patient's medical history that otherwise might be lost or never identified, Gupta said. One out of 20 babies born in West Virginia is diagnosed with neonatal abstinence syndrome and nationwide, Gupta said he anticipates "a lost generation 10 to 20 years from today because of these babies." Some health experts are critical of that practice, saying it labels children for life. Others maintain this helps public health officials keep tabs on a rapidly growing consequence of the opioid crisis that we don't truly understand.
Mitzi Payne, a pediatric neurologist at Marshall University in Huntington, said she foresees a rise in the number of children who have issues with their behavior, attention and learning as a result of prenatal opiate exposure and homes destabilized by addiction. She regularly monitors children who come through Murray's unit for developmental milestones and delays. Payne said she worries about what happens when these children grow older. Since opioids were as normal as glucose for these babies while they developed during pregnancy, Payne said, what happens if they experiment with substance use themselves later in life.
"If that first opiate they take, are they going to feel better than they ever had, more than somebody else who may not have been exposed," Payne said. "Are they going to be at a higher risk of addiction themselves, and be more challenging to treat?"
About 10 miles away from Murray's unit, Harrison is working on her second chance. In a pink three-ring binder, she keeps a five-page goodbye letter to heroin that she wrote and signed with the Narcotics Anonymous mantra: "NA JUST FOR TODAY!" On her Facebook profile, she declares she's the "New Me," and she tries not to dwell on the past. But there are days when traumatic memories weigh her down so much she can't get out of bed.
But Harrison has what Murray says so many others don't: a support system. Harrison's grandparents — Douglas and Donna Kay Conn, ages 71 and 69 — drive her to her doctor appointments since she has no car. They adopted her three children, ages 4, 6 and 9, and allow her to visit regularly. After Harrison gives birth, she wants to get a driver's license, a GED and a job, her grandmother said. She has big plans for her life, including keeping and raising her youngest child after he is born.
On an unusually quiet morning, Conn considered her granddaughter and her granddaughter's soon-to-be son, while finishing some online banking at her home computer. Harrison was watching her daughter at her apartment, and her other two sons were at school, so no one was interrupting Conn, asking for Doritos or help with homework.
"She told me she wanted to change her life, to have that baby and keep the baby," Conn said. "So far, she's true to her word."
But Conn said she has a fear that always nags at her, that never really goes away. That one day, someone will knock on her front door and tell her that a loved one has overdosed and died.
"I try to encourage her," Conn said and then paused. "But sometimes, there's a little doubt in my mind, a fear of her going back."