Traditionally, newborns are pictured to be 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 experience in their first few days of life.
NAS is a condition that occurs when a mother becomes pregnant while using opioids or other addictive drugs. The child is born with an addiction that has been inherited from the mother and begins going through withdrawals, causing a variety of aggressive, painful symptoms such as tremors, irritability, weight loss and seizures. Newborns may require pharmacological treatment, which may include small doses of a drug in the same family as what the mother took throughout pregnancy.
Sandra Brooks, M.D., associate medical director for the neonatal intensive care unit (NICU) at Johns Hopkins All Children’s Hospital, emphasizes that these incidents are not always the case of street drugs, as many traditionally assume. Often, the mother has gone through an incident such as a car crash or surgery that was followed with 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
More than 4,200 Florida newborns were born to mothers using opioids in 2016, a dramatic increase of more than 1,700 over 2015, according to the Florida Agency for Health Care Administration. On average, Johns Hopkins All Children’s treats 100 newborns with NAS every year. 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. Johns Hopkins All Children’s adapted these principles by creating a quiet physical space in the NICU for these babies and training a team of nurses to provide non-pharmacological comforting measures around the clock. “The results we are seeing are two-fold,” Brooks says. “We are seeing a larger number of babies not going on morphine. If they do end up going on morphine, which is about 50 percent, the duration in which they are on medication is less.”
In addition to depending less on medication, Johns Hopkins All Children’s also is shortening the newborns’ length of stay in the hospital, says Aaron Germain, M.D., medical director of the NAS Management Committee. Five years ago, a newborn with NAS would spend more than 30 days in the hospital. Now, the average is just 13 days.
“The faster we can get the baby home, the sooner we can restore the family unit,” Germain says.
But NAS is not an illness that just disappears after 13 days in the hospital. “We’re trying to understand the long-term impact,” Tony Napolitano, M.D., chair of the Department of Pediatric Medicine, says. A study in Australia published in Pediatrics last year found newborns diagnosed with NAS were associated with poor academic performance. Although there are currently a number of studies on the long-term impact around the United States, Napolitano says, one of his goals is to learn more.
“It's not just physical (well-being), it is also about social well-being (and) school well-being,” Napolitano says. “What we’re trying to understand is what causes this small group of children to continue to have problems through their teen years.”
One step toward this understanding is a follow-up program. Johns Hopkins All Children’s Outpatient Care now has a developmental follow-up program in Sarasota to evaluate children born with NAS until the age of 5. One of the children who went through the program is Enzo.
Enzo was born with a severe case of NAS and adopted at birth. As he grew into a toddler, his parents noticed a number of developmental issues including the way 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 grow into a healthy childhood. This is not the case for all children with NAS.
Awareness and Education
Much remains to be learned about NAS. One of the ways to bring about change is awareness and education. 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.
The increasing awareness regarding NAS in recent years is gaining attention 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.
This story first appeared in For The Kids magazine. Visit hopkinsallchildrens.org/neonatology for more information on the Johns Hopkins All Children’s Maternal, Fetal & Neonatal Institute.