By Sarah Colson
First in a series. The Mountain States Foundation announced in late January the Foundation’s fundraising efforts for Niswonger Children’s Hospital would focus on creating a special unit dedicated to caring for babies born with neonatal abstinence syndrome (NAS) – babies born addicted to opioids. Our first instinct here at Johnson City News & Neighbor was to convey the information and move on. After further thought, we elected to spend some time learning about the broad ramifications of a fairly recent phenomenon that has reached epidemic proportions. While professionals from medicine, education, social work and other fields are still learning about NAS, which was nearly unheard of a decade ago, they are grappling with its effects daily. So, too, are extended families and their support systems of friends, co-workers, faith communities and others. Over the next couple of months, News & Neighbor will offer a series of articles intended to shed some light on a problem whose costs to society are significant and growing, and whose effects on families create hardship, but can also yield endurance, heroism and hope. This week’s story provides a general introduction to NAS, with statistics, background and comments from a doctor and nurse who are experts in the subject thanks to direct experience at Niswonger.
When Krista Hatley began her nursing career 10 years ago, she knew she would be dealing with screaming babies — she didn’t expect to find herself working in the midst of a veritable epidemic of newborns whose screams result from the agony of drug withdrawal.
That’s because when Hatley began her career at Niswonger’s Children’s Hospital, neonatal abstinence syndrome (NAS) was an anomaly. In just a decade, however, the now-chief of nursing staff said NAS babies compose anywhere from 10 to 30 percent of her NICU patient census.
“When I first started we would maybe have one (NAS baby), or two every once in a while, not very often,” said Hatley. “Then as the years went past we would see more and more and more. I remember whenever we did have that one, everybody would be like, ‘oh, I don’t know if I want to take care of this baby; it’s just so trying.’ Now you can have an assignment and there are three of them in one assignment and in the whole area there can be a bunch of them mixed in. It’s a very different environment now.”
NAS occurs when a newborn withdraws from drugs because of being exposed to them while in the womb. Babies in withdrawal experience symptoms similar to what an adult might experience while withdrawing from drug use: mottled skin, diarrhea and vomiting, poor feeding, slow weight gain, fever, irritability, excessive crying, sweating, trembling and seizures. According to tn.gov, 986 cases were reported in Tennessee last year. 147 of those cases, or 14.9 percent, were reported from Northeast Tennessee, excluding Sullivan Counties, which had another 74 cases, or 7.5 percent.
“My very first day, walking in here as a nurse, I definitely did not think that this would be something that I would be talking about today,” Hatley said.
Gathering the data
Northeast Tennessee currently has the highest prevalence of NAS infants in Tennessee, ranging from 41 to 57 cases per 1,000 deliveries. Hatley is a part of Tennessee Initiative for Perinatal Quality Care (TIPQC), which meets annually to discuss perinatal trends across the state. People from West Tennessee, Hatley said, weren’t noticing these trends like her staff at Niswonger was.
“In Memphis they did not have this problem, but when you got the Knoxville folks together and the Chattanooga folks and us, everybody was like ‘this is such a huge problem and we’re really seeing this.’ So we did start a project to gather data on these patients and see the trends and where we are, and the upstream effects and downstream effects from that.”
Hatley and her team with TIPQC gathered specific data points such as: what is the mom using? Is she in treatment? Is the mother getting other sorts of therapy? How long was the baby in the NICU? Did the baby have to go on replacement therapy (typically, morphine)? Did the baby go home with the mother or was Child Protective Services (CPS) involved?
“The results have been pretty shocking,” Hatley said. “We have a monthly webinar and just kind of see the trends. It was still rising (last year). I think that gave us the big revelation that we need to do something more than just treat these babies. There’s just so much to it.”
Downstream effects include a widespread opioid abuse trend. In 1999, opioids represented 2.1 percent of maternal substance abuse diagnoses; just 12 years later, in 2011, opioids represented 26.5 percent of these diagnoses.
As a result, Hatley said the need to treat NAS babies has been accelerating in the past decade. Only five hospitals in Tennessee are state-designated Perinatal Centers. The closest to Niswonger’s NICU is 100 miles away in Sevierville.
Taking action at home
Because of that great need, Niswonger is currently raising funds for a new NAS ward. The current NICU (Neonatal Intensive Care Unit) has 39 beds, including seven private rooms. The non-private beds are designed in an open-baby area, with little space between beds. The new NAS ward, Niswonger’s neonatologist Dr. William Devoe said, would give the NAS babies what is most important to their recovery: a controlled, quiet environment.
“The goal is to really have all of our babies who are undergoing drug withdrawal in a private room,” Devoe said. “These kids are very sensitive to light and sound and everything like that.”
Hatley said trying to comfort withdrawing babies in the NICU as it stands right now can be difficult. “It’ll be nicer to be able to keep it quiet and we can control the environment much better in single-family rooms than we can in that open bay where there’s alarms going off and it’s noisy and so congested and crowded. These babies can get so stimulated from all of that noise and commotion if something’s going crazy, then they instantly wake up and start crying. If you only have one nurse and three crying babies, somebody’s going to get avoided.”
Devoe and Hatley said the new ward – it would include an additional 18 rooms and is estimated to cost $500,000 – would treat the moms and babies more as a “family unit.”
“The way it is now,” Hatley said, “they don’t have a bed to sleep in to stay with that baby so they’re just out in the open. Sometimes you need to have those really personal conversations with these families. They typically are struggling and need a different form of communication than the average premature patient. The new unit would provide a closed place where they can really bond with that baby whereas right now it’s really hard in that open area.”
Unfortunately, Hatley said, while some moms seek treatment after giving birth, she and her colleagues have also seen cases of mothers building unhealthy relationships with other mothers with babies in the open NICU.
“The struggles with having them all in that area, all together, is that they tend to make friends with each other,” Hatley said, “and they go out to the parking lot and smoke together, which isn’t always a good thing. So with this new area, we are anticipating having support-group type of meetings with these families so that we’re hopefully fostering relationships that are healthy.”
Devoe said that dealing with a baby going through withdrawal is difficult on everyone involved, particularly on the mother who might be facing discussions with DCS, social workers, nurses and therapists who might be training that mom on how to best care for her child.
“It’s all about teaching the mothers how to cope with the symptoms,” Devoe said. “We teach them massage techniques, bathing techniques, how to feed, and some basic parenting skills to address the irritability that these kids have to deal with.”
At the end of the day, Devoe said, the new NAS ward would just be a tiny piece in the jigsaw puzzle of the effects of large scale drug abuse in East Tennessee. But, Hatley said, the Niswonger staff, as well as the broader community, has to start somewhere.
“These babies need something different,” Hatley said. “We didn’t recognize it early on … we knew what we knew and just kind of did what we did. But it is definitely reactionary now. Considering just the sheer volume of NAS babies, it’s now like, ‘wow, something has to be done.’”