Compassionate care for the mothers was crucial to positive outcomes for opioid-dependent babies.
I gave birth to my daughter in late January of 2014. It was the kind of birth you see in the movies—the contractions started hard and grew closer together within moments. By the time I realized I was in labor, I was already in too much pain to walk. I began needing to push while my husband was on the phone calling for an ambulance. The 911 operator had to walk him through the beginning of my daughter’s delivery. Luckily, paramedics showed up to take over while she was still crowning. The lieutenant who delivered her said it was her first completed childbirth. I will never forget holding my newborn daughter in the elevator while we rode down to the ambulance, or how the entire labor and delivery staff burst into applause when we wheeled into the hospital. But the joy and pride of my wild, badass childbirth was quickly replaced by a deep sense of guilt.
Within hours, my daughter began showing symptoms of opioid withdrawal—symptoms like rigid limbs, sneezing, and a sharp, screeching cry that burrowed into my belly and filled me with self-loathing. The withdrawal was from methadone, which I was prescribed and taking under a doctor’s supervision. Methadone has been the gold standard of care for pregnant people with opioid dependencies since the 1960s. I did the right thing. Still, watching my newborn daughter go through withdrawal was excruciating. Unfortunately, the treatment she and I received at the hospital—after that initial congratulatory applause—did not make the experience easier.
My daughter’s level of discomfort was rated using the same system used by the majority of U.S. hospitals. It’s called the Finnegan Neonatal Abstinence Scoring Tool (though its inventor, Dr. Loretta Finnegan, notes with a laugh that her name was tacked onto it later without her knowledge). It consists of a comprehensive list of observable newborn withdrawal symptoms. Hospital staff, usually treating nurses, observe the babies every four hours and tally up the number of listed symptoms they observe. Each symptom is a point, and the overall score for that observation period is used to determine how to move forward with treatment. Usually a score above eight means the infant should begin an opiate wean, or have his dose raised if he has already been started on medication.
The scoring system is the product of meticulous observations recorded by Finnegan in the early 1970s, when babies were dying from opioid withdrawal simply because nobody knew how to define and treat it. But in 2014, when my daughter was subject to it, and when her scores caused her to be sent to the Neonatal Intensive Care Unit (NICU) to be medicated with titrated doses of morphine for over a month by staff who were less than welcoming to me, I resented the Finnegan Score. Other methadone and buprenorphine-dependent mothers whom I have spoken with have related similar discontent with the system. Usually, the complaints center around variability between the way that different nurses score the babies, or at having their babies sent to the NICU. It turns out, the way some of these hospitals use the scoring system is not in keeping with best practice, according to its creator.
Loretta Finnegan, who is now the Executive Officer of the College on Problems of Drug Dependence, says that inter-rater reliability is key to correct usage of the tool, and recommends that hospitals which use it conduct re-orientations “a minimum of every six months.” She also doesn’t believe that the modern NICU set-up is appropriate for babies who are experiencing NAS without other complications. In fact, she says that “the NICU is the worst place for these babies,” because of the overstimulation caused by the noise and bright lights. Finnegan puts out a training manual, and gives recommendations for the care of infants include swaddling, non-nutritive sucking, decreased stimulation, and plenty of access to mom. When she was doing her clinical work in Philadelphia, she says they “had [their] moms come in every day,” and that “compassionate care for the mothers” was crucial to positive outcomes for the babies. If I had received treatment more in line with Finnegan’s protocols, I probably would have resented the scoring system—and my daughter’s extended hospital stay—a lot less, and I suspect that other mothers would agree.
But besides providing better training to staff who are using the current standard NAS protocol, there are a couple of promising new tools for NAS that could help decrease hospital stays for infants, and promote better trust between parents and hospital staff. One of these tools, developed by Matthew Grossman, M.D., an assistant professor of pediatrics at Yale School of Medicine, is called “Eat, Sleep, Console.”
Renee Rushka gave birth to her daughter in July 2018, while taking methadone prescribed for opioid addiction. Her daughter was treated for NAS at Danbury Hospital in Connecticut. She says that they used the Finnegan NAS Scoring System to assess her baby, but they also performed another form of assessment. Although she says she never heard the term “Eat, Sleep, Console,” and she can’t remember the exact measures, she describes a protocol that sounds very much like the system first developed and researched by Grossman in 2014.
Grossman’s system essentially measures exactly what the name implies—whether the baby is eating at least one ounce of milk, whether the baby can sleep for an hour straight, and whether she can be consoled within 10 minutes of becoming fussy. The protocol suggests maternal contact and non-pharmacological approaches whenever possible. Pharmacological intervention is indicated based on the infant’s level of functioning and comfort, rather than with the goal of reducing all withdrawal symptoms. According to Grossman’s trial conducted at Yale New Haven Children’s Hospital, only 12% of infants required morphine therapy, as opposed to 61% using the Finnegan system (though the study does not tell us whether they used it the way Finnegan herself recommends), and it significantly reduced the length of stay for many of the babies.
Rushka reports that her experience with the combined Finnegan and ESC-like approach was extremely positive. She brought her baby home, healthy, after five days, having required zero medication intervention. She also notes that she did not feel judged by the staff, and even recalls receiving compliments and affirmations about her recovery—pointing toward the compassionate, inclusive approach that both Finnegan and Grossman deem crucial to the care of opioid-dependent infants. Finnegan expresses concerns that inter-rater reliability might also be an issue should ESC become more wide-spread, in part because of the design simplicity. But she’s definitely in favor of various treatments being designed for NAS. “In most diseases there are many ways to treat them,” she notes, adding, “I just need to see more proof [that ESC works.]”
Another promising new tool for treating NAS takes a surprising form. It’s a crib called SNOO, whose designer was not initially thinking about NAS at all—his goal was to reduce Sudden Infant Death Syndrome (SIDS). Pediatrician Harvey Karp says that the crib can not only sense when a baby is in distress, but also what level of distress he’s experiencing—and will rock and emit soothing sounds to help calm the baby, similar to a human caregiver, but all while the real caregiver gets some much-needed rest. Karp says that “NAS babies are more skewed to the irritable side,” then, “the more sciencey way of saying it is that they have poor state control…basically you take a child with terrible state control and give them the rhythmic stimulation they need to get down to a calmer state…it’s so important to our neurology that even adults calm down this way; it’s not an accident we fall asleep in planes, trains, and cars. It’s an echo to this ancient, ancient response to the normal womb sensation.”
Currently, Mark Waltzman, Chief of Pediatrics at South Shore Hospital in Boston, is conducting a study to test the efficacy of the SNOO in reducing distress in babies with NAS. He’s also using Grossman’s Eat, Sleep, Console tool to assess the babies’ level of discomfort. Waltzman’s study is still enrolling, so there’s no data available yet, but he is hopeful that SNOO will offer a relatively simple, non-pharmacological approach to treating the discomfort associated with NAS.
It has been almost five years since my elder daughter was treated for NAS. Mothers across the country still report complaints similar to the ones I had then—but there are also moms like Rushka who are finding community and support in the hospitals where their babies are being treated. Regardless of the outcome of Waltzman’s SNOO trial, or further testing for Grossman’s Eat, Sleep, Console tool, the fact that this kind of diverse attention is being paid toward NAS—and alongside it a resurgence of the compassion toward the mothers that Finnegan first championed in the 70s—gives me a sense of much-needed hope. Maybe attitudes about addiction are making a positive shift within the medical community. Maybe, in the future, experiences like mine will be obsolete, and all opioid-dependent mothers and infants will have the compassionate care and affirmative respect enjoyed by Rushka and her daughter.
