Children’s hospitals are developing protocols to help babies born drug dependent get off to a better start. Here’s how.
Like any newborn baby, Jack Baker entered this world dependent on others to tend to his every need. He also entered this world dependent on drugs. Shortly after Jack’s birth in October 2012, he experienced tremors, sleep problems, excessive, high-pitched crying and seizures—symptoms of neonatal abstinence syndrome (NAS). This constellation of problems occurs in a newborn exposed to addictive illegal or prescription drugs while in the mother’s womb.
Jack spent 22 days in The Ohio State University Wexner Medical Center Neonatal Intensive Care Unit, weaning from the opiates and other substances his birth mother used during pregnancy. Dan and Carrie Baker of Clintonville, Ohio, fostered and adopted Jack. Today, he receives physical, occupational and speech therapy due to developmental delays, but this blue-eyed, 4-year-old is thriving—and bringing an energy and a calm to those around him.
“Jack has taught our whole family to be strong and hopeful, to relax more and never to be afraid to try and learn new things,” says Carrie Baker, Jack’s mother and vice president of the Ohio Children’s Hospital Association. “He approaches every new challenge, every milestone with a smile and fierce determination.”
Newer neonatal territory
The Bakers are far from alone, as more and more babies nationwide are born with NAS after in-utero exposure to opioids—a class of drugs that includes the illicit drug heroin, as well as prescription pain relievers such as oxycodone, hydrocodone, codeine, morphine, fentanyl and others. From 2004 to 2013, the rate of NICU admissions for NAS nearly quadrupled, increasing from seven cases per 1,000 admissions to 27 cases per 1,000 admissions, according to a May 2015 article in The New England Journal of Medicine.
Today, more children’s hospitals are finding new ways to treat a pediatric condition they never trained for in medical school. “Anyone who went into neonatology did so not expecting to deal with the adult world and not expecting to have to deal with addiction,” says Carla Saunders, neonatal nurse practitioner for MEDNAX at East Tennessee Children’s Hospital in Knoxville.
Like Jack, babies born with NAS can suffer a wide range of symptoms, not unlike those adults experience during withdrawal. But these babies also are often robbed of typical newborn behaviors and feelings. They have trouble sleeping, eating, even being comforted.
For Baker and her family, Nationwide Children’s Hospital in Columbus, Ohio, has been their cornerstone for services and programs that have helped support Jack. Nationwide Children’s is one of the six children’s hospitals in Ohio that have come together to improve outcomes for babies born in withdrawal. Working with a grant from the state, the Ohio Children’s Hospital Association (OCHA) Research Collaborative developed a new protocol to reduce the duration of treatment with opioids used therapeutically to wean babies off drugs and to reduce length of stay (LOS).
The protocol standardizes the approach to the medical treatment of NAS patients, ensuring consistent use of medication—whether methadone or morphine—and follows consistent weaning protocols, according to Kristina M. Reber, M.D., associate division chief of the neonatology section at Nationwide Children’s Hospital and associate professor of clinical pediatrics at The Ohio State University College of Medicine. But, she adds, there’s more to it than that. “The more important thing we’ve done is look at what we can do to prevent using medication on these babies,” says Reber. “That’s the non-pharmacologic treatment of these babies—the cuddling, the holding, the quiet; using a lactose-free formula, making sure mom is breast feeding if she can. All this can be helpful in preventing the use of opiates to treat the withdrawal symptoms.”
Improved outcomes with less medicine
Just two states south of Ohio, Saunders finds herself deep in the throes of NAS in an area that has been hard hit by the drug epidemic. The Tennessee Department of Health reports 986 babies were born drug dependent statewide in 2015. East Tennessee Children’s treated about one-third of them, sometimes with more than 30 NAS babies in the facility at one time, Saunders says. But she is no stranger to NAS. “In 2010, by midway through the year, we had already doubled the number of NAS admissions from the year before,” Saunders says. “These babies were placed in our lap, and we believe it was for a reason. We felt like we had to do everything we could for them.”
It was then that Saunders and the team at East Tennessee Children’s reached out to hospitals in bigger cities and conducted a literature review to find a standard of care for these patients. It didn’t take long to discover that it didn’t exist. So with an interdisciplinary team of doctors, nurses, administrators, pharmacists, volunteers, physical, occupational and speech therapists, Child Life staff members and even pediatricians outside the hospital, they launched a quality improvement project to develop a protocol for their hospital. The goal: easing withdrawal symptoms with as little medication as possible.
The team developed a protocol that uses tiny doses of morphine to ease the physical dependency from in-utero exposure and minimize exposure during treatment. The organization layers on holistic practices, such as dietary changes, infant massage, barriers to protect the skin from discomfort and a cuddler program, where trained volunteers hold the babies to calm them and give them a human connection when parents were not there to do it themselves. And the hospital built a new NICU with 16 private rooms reserved for NAS babies, where these patients could receive individualized care in a quieter setting, and parents could more easily bond with their babies.
The program at East Tennessee Children’s has reduced the average LOS for NAS patients from 34 days to 23 days, and babies are discharged without medications that could have devastating effects if not given as prescribed. All of this progress, Saunders says, required focused education about addiction and a conscious shift in mindset: People need to understand the science of addiction and how it changes the brain. “And that was a turning point for many of us—to be able to let go of anger toward the mother and begin to look at this as a disease just like any other disease process,” says Saunders. “We all come to the table with this preconceived idea of what’s happening to these moms. And we are compassionate, provide the best care we can and do our jobs.” Saunders recommends bringing in experts to teach staff members about the science of addiction and what makes it so difficult to overcome.
Less medicine, more mom
For years, 2015 Pediatric Quality Award Winner Yale-New Haven Children’s Hospital in New Haven, Conn., treated NAS patients much like any other institution would. The team used the Finnegan scoring system—a scale designed to quantify the severity of NAS and to guide treatment for each affected baby. They ushered NAS patients to the hospital’s NICU because it was the traditional way to treat these babies. But today, the team is looking at NAS treatment through a different lens and seeing results.
It all started with close observation and good intuition. “We noticed when these patients would come to the inpatient unit where they could room-in with their moms, they were doing better than they were reported to be doing in the NICU,” says Matthew Grossman, M.D., assistant professor of pediatrics at The Yale School of Medicine and quality and safety officer at YNHCH. “So we would say, ‘Does this kid need more medicine or more mom?’ And we started to come down more on the mom part of it.”
The team members also started coming down on the medications for NAS patients every day instead of every other day, as they had been doing. And NAS babies are no longer treated in the NICU. “It’s a big change, but these patients need a very different kind of intensive care,” says Grossman. “They don’t need the intensive medical care; they need that intensive supportive care, which is much harder to deliver in a NICU.” Grossman adds that every paper and every guideline his team found indicates the first line of treatment is supportive care, such as swaddling the baby and feeding when the baby is hungry. But none of that is mentioned in any study of how to manage NAS babies in terms of what kind of medication or combinations of medications to use. This supportive care is not “treated as a real treatment,” he says.
When he looked at LOS across different institutions for babies treated with morphine, Grossman found the average LOS ranged from 15 days to 79 days—a wide variation for essentially very similar patients. “It seems like there’s got to be something else, other than the medications, that’s important, so we started to think maybe it’s this other stuff that is just getting lip service,” he says.
Not only has YNHCH made supportive care a formal part of the treatment for NAS babies, but the team has put the parent at the center of its approach. And that has driven measurable results while creating a more trusted partnership with the parents. “Some of that guilt the parent feels goes away because part of the problem with the guilt is that you are a spectator when you are visiting your child in the NICU,” Grossman says. “You know this happened because of what you were taking, even if it was previously prescribed by a doctor. But now, you’re it. You are the treatment; you are what’s going to make your baby better. That’s empowering.”
Since changing its approach to care, YNHCH has seen the average LOS for NAS patients drop from 27.5 days to about 7.5 days, which has remained the average for about the last two years. And that decreased LOS over that two-year period has resulted in $4 million in reduced costs.
The Children’s Hospital at Dartmouth-Hitchcock (CHaD) in Lebanon, N.H., begins involving the parents of NAS patients during pregnancy. Here’s how the hospital’s process, which was outlined in a 2015 Pediatric Quality Award entry, works: The team at CHaD works with the local obstetrics group to educate and train the families so they know what to expect when the baby is born, including going out to a local perinatal addiction treatment center to talk with pregnant moms who are participating in therapy. Then, when the baby is born, that newborn never leaves the mother, but rooms in with her and the family.
Not only does this approach give these babies what they really need—a parental caregiver who can hold them, rock them, soothe them and feed them on demand 24/7—but it makes parents feel engaged and involved with the care of their newborn. “The families are so much happier,” says Alison Volpe Holmes, M.D., M.P.H., associate professor of pediatrics at The Geisel School of Medicine at Dartmouth. “The families feel like they are part of the team taking care of their baby, and they are. They are expressing less that they are judged or feeling guilty. They feel we’re partnering with them to do what is in the best interest of their family.”
This family-centered approach has not only engaged stressed-out, guilt-ridden parents, but it is also driving measurable results. By improving the environment of care, keeping NAS babies out of the NICU and improving their feeding and their bonding with their parents, CHaD was able to decrease the number of patients receiving medicine from about half to one in five, according to Holmes. As a result, costs of care have dropped as well:
- For NAS babies treated with medicine, costs have dropped from $19,700 to $8,700 per baby
- For all opioid-exposed babies treated with medicine or not, costs have dropped from $11,000 to $5,300 per baby
Spreading the word
While representatives of children’s hospitals are speaking at industry events, national conferences and at other hospitals about the growing NAS problem and protocols that can help address it, the Bakers are doing their part to share their own personal experience to affect change. Jack and his family traveled to Washington, D.C., to meet members of Congress to help support the Protecting Our Infants Act of 2015—legislation that focuses on combatting the rise of prenatal opioid abuse and NAS—as part of the 2015 Children’s Hospital Association’s Family Advocacy Day. “Babies born dependent on drugs and alcohol have become more prevalent, in all communities, across Ohio and the country,” Carrie Baker says. “It is important to share our story so that other families and caregivers who are caring for a child who was born with NAS know they aren’t alone.”
Megan McDonnell Busenbark is a writer and founder and principal of Encore Communications, LLC, in New Fairfield, Conn.