“Once you see these babies in person, you can understand how hard it is to watch them suffer,” says Susan Cacciavillano, BSN, RN, clinical manager of Chester County Hospital’s neonatal intensive care unit and pediatrics department.
The babies she’s referring to are those born with Neonatal Abstinence Syndrome, or NAS, a group of problems that occur in a newborn who has been exposed to an addictive substance in the mother’s womb, most commonly opioids. These infants can have tremors and be inconsolable; “frantic,” as Cacciavillano describes it. “They rub their wrists and legs together, which breaks down the skin,” she says. “There’s also skin breakdown on their backsides because their stools are very acidic.”
Each time the opioid epidemic in the United States is quantified, the figures are staggering. Less than two years ago, the Pennsylvania Health Care Cost Containment Council reported that the rate of newborn hospital stays for substance abuse problems increased 250 percent between 2000 and 2015, when nearly 20 out of every 1,000 newborns faced withdrawal issues. And maternal hospitalizations involving opioids increased 510 percent over the same period.
The latest news may be the most heartbreaking yet: On average, a baby is born in withdrawal from opioids every 15 minutes in the U.S., according to recent research.
Over the last five years, an average of 32 babies with NAS have been born each year at Chester County Hospital (CCH). “At any given time, there’s a baby in the NICU going through withdrawal,” Cacciavillano says. “We have one patient now, but we’ve had as many as four or five at once. A few years ago, we could go a couple of months without seeing one. Now, if a day passes without one, it’s unusual.”
An evolving response to a growing epidemic
In response to the surging opioid epidemic, which is widely believed to be years from peaking, hospitals across Penn Medicine are developing protocols to improve the continuum of care for expectant moms with substance abuse issues, and newborns with NAS.
At CCH, when an infant is born to a mother who is known to either be actively using an opioid or receiving methadone through a treatment program, the withdrawal symptoms of the baby are graded using the Finnegan Scale, which assesses 21 of the most commons signs of NAS and scores them on the basis of pathological significance and severity of the adverse symptoms. Otherwise, all newborns’ stools are tested. Should evidence of a substance be found, the Chester County Department of Children, Youth, and Families is notified.
Depending on the Finnegan score, the baby may be treated immediately with medication. With opioid withdrawal, the first drug administered is typically morphine, titrated so that it’s safer for the baby, according to Rajeev R. Shah, MD, who oversees the hospital’s pediatrics physicians.
If a newborn does not require treatment right away, they’re monitored for five days. Withdrawal symptoms will usually become evident in the first 24 to 48 hours, but Cacciavillano says she’s had cases where they remained dormant until the fifth day. When a newborn with NAS does require treatment, Shah says they will stay at CCH for an average of 21 days.
Determining when the mother is physically and mentally prepared to take her baby home is a decision that involves a variety of disciplines, from the NICU nurses and neonatologists, to the hospital’s social workers and representatives from the county’s Department of Children, Youth, and Families.
The goal of the protocol, Shah says, is to cause a minimum amount of distress to the newborn. “We don’t want to overmedicate infants,” he says. “We want to get them home safely and efficiently.” How to do that, exactly, is why the protocol is ever-evolving. Because the opioid epidemic is still relatively new, the treatment is constantly being honed. Shah periodically meets with his team to discuss the current medications they use on the NAS newborns and the doses at which they are administering them so that the effectiveness of both can be reevaluated.
“As we’ve gotten more experience, we’ve recruited physical therapy and other ancillary services to help the child from birth to discharge,” Shah says. “And as the standards of care have improved, so, too, have the overall results. But we still have a long way to go.”
Treat mom and the baby will benefit, too
The protocol is one of several initiatives Chester County Hospital and Penn Medicine have launched to address the littlest victims of the opioid epidemic.
In December, with the aid of a $10,000 grant from Huggies, the hospital started a volunteer newborn-hugging program. Twenty-four volunteers — who undergo extensive training and background checks — work with bedside nurses to comfort babies when parents or family members aren’t present. Research has shown that ample human contact aids babies in their development of good clinical outcomes. Interventions, such as holding, rocking and soothing babies, as well as singing and talking to babies support weight gain, reduce length of hospital stays, improve brain development, and in the long term, enhance the development of trusting relationships. The program is not a new idea. In fact, Pennsylvania Hospital started its program 30 years ago to provide extra care for premature babies in its large NICU. But the protocol has garnered renewed interest over recent months as a means to help NAS newborns cope.
The volunteers aren’t just good for the babies, they’re relieving strain on the nurses, too. “There are times when we have four NAS babies under the care of two nurses, so just having the extra hands available makes a big difference,” says Cacciavillano, who was integral in establishing the program at the hospital.
And, in its first year, Penn Medicine’s Perinatal Center of Excellence (also known as Mothers MATTER), a grant-funded program launched in collaboration with the Penn Presbyterian Medical Center and the community-based Maternity Care Coalition, has seen more than 40 women, according to the program’s clinical director, Carrie Malanga, RN, PMHNP-BC.
Mothers MATTER offers comprehensive, compassionate care for pregnant and postpartum women whose lives have been impacted by opioid dependence. The program aims to reduce post pregnancy relapse rates by addressing social and psychological barriers to rehabilitation, which can complicate treatment for opiate dependence.
“Patients are screened by our specialists and connected to behavioral health services and support they might need both during and after pregnancy,” says Catherine R. Salva, MD, Medical Director of the Helen O. Dickens Center for Women’s Health at the Hospital of the University of Pennsylvania.
“Coordination is critical to link women to the services that will support them in their recovery,” Malanga says. “One of the strengths of Mothers MATTER is that we pull these services together to help mothers prepare to bring their baby home and address substance use.”
The program focuses on pregnant women with opiate use disorder, but those with other substance use disorders and women who are not pregnant may qualify.
“Because Mothers MATTER is an inclusive program, we strongly urge community physicians to refer any patient who has a known addiction, uses opiates for chronic pain, or faces a one or more psychological disorders,” says Hannah Gross-Eskin, LSW, Interdisciplinary Care Coordinator for Mothers MATTER. “Patients do not have to receive care from a Penn provider; we welcome any patient who could benefit from this program.”
Twenty-two women are currently under the program’s care, according to Malanga. Participants are transitioned out of Mothers MATTER when they reach a year postpartum.
While so much remains unknown at this early phase of the crisis, one clear fact has emerged from the design of these programs and others like them: The mothers need treatment. Treat the parents, and the kids benefit, too.
“While they’re in the hospital, we help moms and extended family members with newborn care skills, and when they go home, we make sure they have the support they need because that added stress can be difficult on a mom who’s already working on her own recovery,” Shah says.
The instinct may be to focus the help on the baby, but this is a scenario, Cacciavillano says, that encompasses the entire family, including the grandparents, who may need to assume custody of the infant if the mother’s not prepared to. Shore up the child’s support system and the likelihood for a normal future beyond those first tumultuous weeks in the hospital increases dramatically.
Such measures, though, will carry a family only so far if the mother’s not emotionally invested. So it all comes down to compassion. “In my mind, there’s no doubt these mothers feel judged,” says Cacciavillano, who’s also coping with addiction within her own family. “I’m constantly reminding my staff that there’s more than meets the eye.”