All Children's Hospital Foundation

TRADITIONALLY, NEWBORNS ARE pictured as smiling, laughing and full of life—not shaky, irritable and experiencing seizures. Unfortunately, for children born with neonatal abstinence syndrome (NAS), these are just a few of the symptoms they can begin to exhibit in their first few days of life. NAS occurs when a mother becomes pregnant while using opioids or other addictive drugs. The child becomes dependent on the mother's drug while in the womb and, once born, begins going through withdrawal, causing a variety of aggressive, painful symptoms such as tremors, irritability, weight loss and seizures. Newborns with NAS may require pharmacological treatment, possibly including small doses of a drug in the same family as what the mother took throughout pregnancy. Nearly 2,500 Florida newborns had NAS in 2015, about 600 more than the previous year, according to the Florida Agency for Healthcare Administration. On average, Johns Hopkins All Children's treats 100 newborns with NAS every year. NAS is not always caused by street drugs, as many people assume, points out Sandra Brooks, M.D., associate medical director for the neonatal intensive care unit (NICU) at Johns Hopkins All Children's. Often, the mother has gone through an incident such as a car wreck or surgery and experienced pain that warranted the use of opioids. "A lot of work needs to be done to empower those mothers and strengthen their social network," Brooks says. "We start by improving the first weeks of those babies' lives. Ultimately, we hope that leads to a healthy childhood." NEW SOLUTIONS, LONG -TERM RESEARCH Johns Hopkins All Children's is working on solutions. Newborns with NAS need to be held and comforted constantly to ease their symptoms. The optimal environment is a quiet, dark place, away from bright lights and loud noises. That's why Johns Hopkins All Children's created a quiet area in the NICU for these babies and trained a team of nurses to provide nonpharmacological comforting measures around the clock. "The results we are seeing are twofold," Brooks says. "We see a larger number of babies not needing morphine. For those who do require morphine, which is about 50 percent, the duration in which they are on medication is shorter." Johns Hopkins All Children's also is shortening the newborns' length of stay in the hospital. Five years ago, a newborn with NAS would spend more than 30 days in the hospital. Now, the average is just 13 days, says Aaron M. Germain, M.D., medical director of the Neonatal Abstinence Management Committee. "The faster we can get the baby home, the sooner we can restore the family unit," Germain says. NAS can continue to cause problems long after a newborn leaves the hospital. A study in Australia published in Pediatrics this year found children diagnosed with NAS were more likely to have poor academic performance in school. Although there are currently a number of studies underway on the long-term impact of NAS around the United States, Johns Hopkins All Children's is working to learn more. "NAS affects not just physical, but also social and academic well-being," says Tony Napolitano, M.D., chair of the department of pediatric medicine. "We're trying to understand what causes this small group of children to continue to have problems through their teen years." Johns Hopkins All Children's Outpatient Care has created a developmental follow-up program in Sarasota to evaluate children born with NAS up to age 5. One of these children who went through the program is Enzo, who was born with a severe case of NAS and adopted at birth. As Enzo grew into a toddler, his parents noticed a number of developmental issues including how he rolled over, crawled and walked. His parents ensured he was receiving care from physical, speech and occupational therapists as well as academic, behavior and social interaction tutors. Now 4, Enzo has overcome most of his initial physical delays, but he still struggles with some fine motor skills and poor recall. His story is inspiring in that he received the follow-up care he needed to have a healthy childhood. This is not the case for all children with NAS. AWARENESS AND EDUCATION Much remains to be learned about NAS. Johns Hopkins Medicine will bring the "A Woman's Journey" conference to Tampa, St. Petersburg and Sarasota in February and March 2018. The conference focuses on empowering women on issues that affect their health and well-being, including the opioid epidemic. In recent years, NAS is also gaining increasing awareness among donors. Several families have made donations specifically to fund the NAS management program, research and developmental efforts, Germain says. Through proper funding and increasing awareness, Johns Hopkins All Children's hopes to change the future of NAS, one newborn at a time. Visit HopkinsAllChildrens.org/Neonatology for more information about the Johns Hopkins All Children's Maternal, Fetal & Neonatal Institute. Fall 2017 9 In the last five years, Johns Hopkins All Children's has reduced inpatient days for a newborn with NAS from more than 30 days to an average of 13 days. Treatment ■

• Cover