Now an outcome study is underway. Lester is coprincipal investigator, with Jonathan Davis, MD, professor of pediatrics at Tufts, of an NIH-funded, double-blind, randomized controlled trial at several US hospitals (including Women & Infants, where Czynski is the site PI) to compare methadone versus morphine for the treatment of NAS; tease out long-term effects of prenatal opioid exposures; and look for genetic, epigenetic, and newborn neurobehavioral markers that could predict susceptibility to and severity of withdrawal symptoms.
“At least 20 to 25 percent of opioid-exposed kids do not develop NAS. Why not?” Lester says. “To some of us, that’s the most interesting question.”
Pregnant women enrolled in the study are taking methadone, buprenorphine, or pain medication; their babies will be treated with either morphine or methadone if they develop NAS, and researchers will follow the children for 18 months to document developmental milestones. They hope their findings will help guide clinical practice by determining the short- and long-term effects of these treatments. “There’s a lot of regionalization in what people use to treat NAS,” Czynski says. “In California we used methadone, morphine, opium—personally, I’ve treated kids with everything.”
What’s more important than the type of medication is that a hospital adheres to a standardized treatment protocol, rather than letting provider preference guide each child’s care. Researchers at six Ohio children’s hospitals demonstrated that in a paper in Pediatrics in 2014: whether they used morphine or methadone, protocol-based weaning cut the treatment time nearly in half and the infant’s hospital stay by a third.
Onset of withdrawal symptoms may take one day or several, and it begins abruptly. “Everything’s great and suddenly it’s not,” Czynski says. Hospitals use a tool—usually based on the Finnegan scoring system—to rate, at regular intervals throughout the day, the severity of various central nervous system, respiratory, gastrointestinal, and other symptoms, and tally the Finnegan scores; a total of 8, Czynski says, “is the beginning of the gray zone; 12 is clearly the zone of withdrawal.”
At that point the baby starts receiving medication, with dosage depending on his weight and how long it takes to “capture” him, meaning withdrawal symptoms cease and he’s stable for 48 hours; then weaning can begin. “The poster child for withdrawal will wean down in a predictable fashion,” Czynski says. But things don’t always go as planned: if symptoms return, dosage is increased until the baby is captured again, and the taper restarts. Though most babies go home after two or three weeks, a few may be stuck in the hospital for a month or more.
Bentley Fedorak showed signs of withdrawal, including tremors and mottling, the day after he was born, says his mom, Caitlyn O’Brien. “He didn’t want to be not held. A normal newborn can soothe themselves. But he would just be upset until you picked him up again,” she says. It took two weeks for him to stabilize, so the taper could finally begin. “It was a roller coaster to get him where he needs to be.”
Close maternal involvement benefits all parties: mom, baby, and hospital staff. “If a mother can be part of the team, she can give information to nurses about how the baby is doing,” Coyle says. When families see withdrawal symptoms for themselves, “they want the baby on medication. Having them here and witnessing helps them understand.”
Citing a recent Pediatrics study that demonstrated reduced costs and length of stay when moms could room in with their infants, Coyle adds, “All of us are working to find space to keep mothers and infants together.”
A few years ago, Women & Infants began offering private rooms, at no charge, to some mothers of NAS infants. “Caring for these babies can be challenging,” nurse manager Donnalee J. Segal, MSN, says. “This model of care allows for mom to care for and learn about her baby under the guidance of our nursing staff.” Nonpharmacological interventions like rooming in, skin-to-skin contact, and breastfeeding not only aid bonding, they may delay onset and reduce severity of NAS symptoms. “We feel that the best thing for these babies is to keep them together” with their mothers, Segal says. “Our hope is that babies will require less medication and go home sooner.”
Kimberly Pelletier, of Central Falls, RI, got a private room at Women & Infants with her son, Preston, who was born in July. “Now that I’ve been with him every day I just feel so much better,” she says, cradling the sleeping 10-day-old on a loveseat near the nursery. She says when a nurse had told her Preston was having a rough day, “he saw me, I picked him up, and he was fine within a minute.” Pelletier strokes his face. “I think he just knows it’s me. He really does.”
Since Czynski joined the hospital earlier this year, he’s instituted NAS rounds, every afternoon at 1:30, with the core group of caretakers: physicians, nurse practitioners, social workers, occupational therapists—and families, if they can. “The most important person in the whole entire spectrum is the mother,” Czynski says. “She can really tell us the subtleties of their child. If she tells you there’s something different about their child, there’s something different about their child, and we need to respect that.”
O’Brien—who has two daughters at home, Hailie, now a toddler, and Alexis, 10, who’s just starting fifth grade—can’t stay in her cozy private room with Bentley every night. But she and Perry Fedorak try to attend daily NAS rounds. “Sometimes it’s a lot of people filing into this tiny little room,” she laughs.
The regular access to so many experts helped them understand why their son needed phenobarbital to calm his withdrawal symptoms. “I always looked at it like, if he’s not having seizures, why give him a seizure medicine?” O’Brien says. “It wasn’t until we gave him the phenobarbital, that’s when you could tell it was that little bit he needed to really be better.”
But close involvement can be challenging for some women on opioid replacement therapy, who visit a clinic every day to take their medication and attend counseling sessions. Furthermore few hospitals have the facilities to care for NAS infants, so some mothers have a long drive to get to their home clinic. O’Brien has to go to Woonsocket, a half-hour drive, every day; other women travel greater distances. “A lot of times, these patients take buses,” Segal says. “They could be gone three-quarters of the day just to get their medication.”
Pelletier, who was used to a daily 45-minute bus trip from home to her South Providence methadone clinic, had a much shorter ride while Preston was in the hospital. “I don’t want to get back on the bus,” she says. “Especially when you just had a baby and—I’m not healed, you know?” But reflecting on the long bus commutes she’s had over the past four years, when she’s lived even farther from the methadone clinic, she adds, “These are the sacrifices you have to make, unfortunately.”
Segal and Czynski want to minimize those sacrifices. They’re working to partner with a nearby clinic that could administer women’s medication while they’re staying at Women & Infants. “You help facilitate their recovery while also caring for their child,” Czynski says. “The mother and baby collectively are one team. You have to maximize treatment because that’s the best thing for the baby.”
Jo-Ann Bier’s patients at her Boston Children’s Hospital developmental follow-up clinic in North Dartmouth, MA, include children exposed to prenatal opioids. Several years ago she applied for, but didn’t get, a grant to offer a developmental follow-up program at a local methadone clinic. “We would have had a great show rate,” she says. She agrees with the comprehensive approach Czynski is advocating. “If you can take care of mothers and their babies together, and their fathers if they’re involved, that would be helpful,” Bier says. “These families benefit from intensive support.”
“The changes that Dr. Czynski is making at Women & Infants are truly sea changes that could very well provide a new model of care for the entire country,” Lester says.
In his longitudinal studies of prenatal exposure to cocaine and other drugs, “if there’s one thing we learned, it is that the environment has as much to do with the outcome of these kids as these drugs,” Lester says. “The environment that some of the current NAS kids are growing up in can be quite positive.”
Lester draws a contrast between pregnant women using illicit drugs and those on opioid replacement therapy. “You’re not taking street drugs, you’re taking care of yourself,” he says of the latter group. “A lot of women in methadone maintenance go to the clinic, they take their dose, they go to work. They can live normal lives and provide better environments for their kids.”
“Lots of data show that women on methadone are healthier, have a lower incidence of infections and complications, are more compliant, and are more likely to get prenatal care,” Coyle says. But many states, including Rhode Island and Massachusetts, require hospitals to report to child welfare services any substance use during pregnancy, including replacement therapy or an opioid prescription deemed medically necessary. For women who aren’t in treatment or are concealing their substance use, and haven’t learned about NAS and that their baby won’t go home right away, she says, “It’s like they’re hit between the eyes with a two-by-four.”
Heather Howard, PhD, LICSW, works with families of NAS infants at Women & Infants to make sure they have the support they need when their children go home. “There are no studies that say if you have a positive tox screen, then you can’t parent,” she says. But guilt, coupled with fear of the child welfare system, “which is very real,” may deter mothers from seeking prenatal care.
“When a woman becomes pregnant, she becomes more … treatment ready,” Howard says. “It’s a great window to help someone.” As a patient advocate, she supports mothers who want to stay with their babies, makes sure they’re getting the treatment they want, and connects them with programs like Healthy Families America, which sends trained staff to families’ homes to model positive parenting and, she says, helps more parents and children stay together.
Despite those interventions, Howard says she sees child welfare services separate mothers from babies up to three times each week. She talked about one woman who was on methadone maintenance and staying with her newborn son at Women & Infants this summer as he recovered from NAS. “She’s doing everything she needs to do, she’s bonded with the baby,” Howard says. But in August, the woman temporarily lost custody of her son.
“We need to think about this as a public health concern, rather than a moral failure,” Howard says. “That’s going to take a major cultural shift.” She, Coyle, and Segal are members of Rhode Island’s NAS Task Force; among its goals are to standardize treatment protocols at all birthing hospitals in the state and to recommend screening of all pregnant women for opioid use.
The task force also wants to rekindle the Vulnerable Infants Program (VIP), a hospital-based program that Lester developed in the late 1990s to coordinate drug treatment plans with a special Family Treatment Drug Court and keep more families together. The VIP was supported by grants, yet despite its success the state didn’t step up when the funding ran out. “You can’t sell prevention. We’ve been trying to do that for years and years,” Lester says. He’s helping the task force develop a similar program specific to the opioid epidemic, write supportive legislation, and ensure a permanent funding mechanism.
“There are still plenty of women being prosecuted,” Lester says. “There’s still a fair amount of prejudice and hatred.” But judicial bias against mothers rarely serves the children the courts are aiming to protect. “If the kid is in foster care and they go from one foster home to another, that kind of disruption has a really big impact—especially as attachments are developing, as emotional lives are developing,” he says.
Czynski envisions a comprehensive NAS unit at Women & Infants that better engages and prepares families for the transition home. “There’s work in progress for more of a multidisciplinary approach … to get them plugged into mental health, medical, and social services support,” he says, such as group counseling at the hospital and home visitation programs like Healthy Families America. “The medical side doesn’t capture the complete needs of a family,” Czynski says. “We’re just one time point in this child’s life and journey.”
When Hailie Fedorak comes to the hospital in early September to visit her new brother, Bentley, she toddles around the room and out into the hallway, intent on inspecting everything and every person in the vicinity, her parents patiently steering her back to the room when she strays too far. But when she’s with Bentley she stops and leans close, taking it all in, this new little person.
“It’s funny to watch her with the baby. She’s trying to figure him out,” Caitlyn O’Brien says. She says she was pleased at Hailie’s 18-month evaluation for the longitudinal NAS study, where she demonstrated above-average problem solving and word acquisition abilities. “She’s a thinker. Nothing gets past her,” her mom says.
“I got pregnant with Hailie four months after I got clean. That kept me going,” O’Brien says. Now she’s also going to Narcotics Anonymous meetings, finding shared experiences with other people and focusing on her recovery. “Nobody wants to be in the situation I’m in,” she says. “But the fact of the matter is I’m in it and there’s nothing I can do but push forward.”