Soon after learning she was pregnant, Nichelle LeBlanc was told her baby could have tremors, diarrhea, difficulty eating, and excessive crying soon after birth — symptoms of a newborn going through withdrawal from opioids.
LeBlanc of Middletown was hooked on heroin for about six years, on and off, after trying the drug for the first time when she was 19 years old.
After becoming pregnant, LeBlanc started medication-assisted treatment for her addiction, which is considered by many to be the standard of care for treating pregnant women addicted to opioids.
LeBlanc was prescribed buprenorphine, which would help curb her cravings for heroin. But since buprenorphine is an opioid like heroin, her baby could go through withdrawal after being born, doctors told her.
The guilt was overwhelming.
“I was really scared because I felt awful,” recalled LeBlanc. “But I didn’t want to have any sort of cravings, because just because you’re pregnant doesn’t mean you’re not an addict anymore.”
But a program pioneered at Yale New Haven Children’s Hospital would make LeBlanc the centerpiece of her child’s treatment in a way that improved recovery for both of them.
This was her second pregnancy, and during her first she did use heroin. The father has guardianship of her older daughter. But this time, she was determined to stay clean so she could mother her second child.
When LeBlanc decided to start her addiction treatment last May, Connecticut and the nation as a whole were seeing a sharp increase in the number of newborns experiencing withdrawal from opioids — a condition known as neonatal abstinence syndrome or NAS.
From 2003 to 2014, the number of NAS hospitalizations nearly tripled in Connecticut, from 137 to 384. There were about 37,650 births in Connecticut in 2014, according to data from the state Department of Public Health.
In the United States, the number of NAS births grew nearly five-fold between 2000 and 2012 — reaching a total of nearly 22,000 infants.
As the number of cases has grown, health care providers across Connecticut and the country have started to focus more on the syndrome, especially since no national standard of care currently exists for screening and treating NAS.
The U.S. Government Accountability Office (GAO) interviewed dozens of people and reviewed dozens of studies about NAS, and concluded in an October report that federal action is needed to address NAS.
In May, the U.S. Department of Health and Human Services published a strategy with key recommendations that have the potential to address some of the challenges related to treating NAS, the GAO report said.
The HHS recommendations include:
- Promoting non-pharmacologic treatment, such as moms and babies rooming together;
- Providing continuing medication education to health care providers for managing and treating infants with NAS; and
- Conducting research on the long-term effects of prenatal drug exposure, which is lacking, so that appropriate services can be developed.
“However, HHS lacks a sound plan for implementing these recommendations,” the federal watchdog’s report said. “The absence of such planning raises questions about whether and when HHS will be able to implement these recommendations in a timely manner and be able to assess its progress.”
HHS contends in its response to the GAO report that full implementation is contingent upon funding.
In the absence of a national standard, hospitals in Connecticut have taken varied approaches to treating NAS.
Many treat these babies in neonatal intensive care units, and when necessary give them morphine and other medications to soothe their withdrawal symptoms, which frequently occur 12 to 72 hours after birth, though not all babies exposed to opioids in utero experience withdrawal symptoms.
This approach is costly, and these babies often end up staying in the hospital for weeks.
In 2009, a team at Yale New Haven Children’s Hospital started to question it. As the number of cases grew, the team saw more and more babies spending weeks in the newborn intensive care unit (NICU) while being treated with morphine and other medications.
They thought there had to be a better way. The team set out to decrease the average length of stay by focusing on treatments that didn’t involve medications, but instead focused on keeping the mother and baby together.
The mothers were encouraged to hold and feed their babies often — to be their comfort through the withdrawal.
“The idea that we would take a baby who is going through withdrawal and probably needs their mother the most, and then we would separate them, just defies reason,” said Dr. Matthew Grossman, an assistant professor of pediatrics at the Yale School of Medicine and one of the authors of Yale’s study about NAS.
“They are just really irritable babies and they need constant attention,” Grossman said. “There’s no one who can do this better than a parent.”
By making the parents, especially the mom, the treatment, the length of stay at Yale for NAS babies exposed to methadone — another opioid medication used to treat addiction — fell from 22.4 days in 2008 to 5.9 days this year.
Among all the opioid medications used to treat addiction, methadone is most likely to cause withdrawal symptoms, according to the Yale study.
Yale’s study was documented in a report published in May in “Pediatrics,” the official journal of the American Academy of Pediatrics.
The Finnegan scoring system
Before switching their protocol, Yale, like health care providers nationwide, used the Finnegan Neonatal Abstinence Scoring System, a tool developed in the 1970s, to determine whether a drug-exposed baby needed treatment.
Babies are assigned points depending on their symptoms, including convulsions, excessive crying, sneezing and nasal stuffiness.
If a baby’s score is high enough, treatment – which commonly has included medications such as morphine – is begun to manage symptoms. While it ameliorates the symptoms, morphine prolongs the time a baby needs to stay in the hospital because the drug requires a weaning process.
At Yale New Haven Children’s Hospital, the number of infants exposed to methadone in utero increased by 74 percent from 2003 to 2009. In addition, these infants were occupying an increasing percentage of NICU beds and had an average hospitalization cost of about $44,800.
From 2003 to 2009, 98 percent of infants exposed to methadone were treated with morphine. Doctors started tweaking their approach to NAS in 2010.
Instead of going to the NICU, babies stayed with their mothers in private rooms on a general ward, which is important because the babies need a low-stimulation environment. Moms were encouraged to feed and hold their babies often.
This is still what happens today, and the approach has been adopted at other Connecticut hospitals.
The American Academy of Pediatrics and the American College of Obstetricians recommend that babies with NAS should be first treated without medications, but with approaches like rooming-in, according to the GAO report.
“By avoiding medications, the baby will get over the peak of the withdrawal symptoms faster,” Grossman said.
In 2014, Yale stopped using the Finnegan score and instead assessed the babies’ abilities to feed, sleep and stay calm in their mothers’ arms.
As long as the babies could do all of these, medications were avoided.
From 2008 to 2016, the proportion of infants exposed to methadone in utero who received morphine decreased from 98 percent to 14 percent; and costs decreased from about $44,800 to $10,300. No infants were readmitted for treatment of NAS and no adverse events were reported, according to the Yale study.
“We haven’t found any downsides as of yet,” Grossman said. “It is better for the babies and better for the parents.”
About five years ago, Middlesex Hospital in Middletown started to revise its NAS policies. First clinicians tried a different combination of medications, and after that had little impact on how long babies were staying in the hospital, they tried using less medicine and a quicker weaning process.
While that did decrease the length of hospital stays, it wasn’t enough for the Middlesex providers. They wanted to do more for the babies and mothers. After meeting with the team at Yale, Middlesex providers decided last November to mimic the Yale approach. They threw out the Finnegan, and instead assessed the babies’ ability to eat, sleep and be consoled. If all three could be done, no morphine or other medication was administered. Moms and babies stayed together.
“The power of a mother’s touch is amazing and needs to be respected,” said Laura Pittari, lead neonatal nurse practitioner at Middlesex.
“You need to be patient, to expect symptoms and more importantly accept symptoms,” Pittari said. “It is cruel to give these babies drugs that only prolong the process and lead to days and weeks of irritability without the constant attention from their parents.”
LeBlanc’s baby — a five-pound, 11-ounce girl named Rosalia — was born last Dec. 15 at Middlesex. LeBlanc did not use heroin at all throughout the pregnancy.
LeBlanc, 26, was encouraged to be with her baby girl, nicknamed Rosie, who only had mild withdrawal symptoms, including loose stools and some difficulty gaining weight.
There was rarely a time when Rosalia wasn’t in her mom’s arms or lying on her chest, while LeBlanc sang, “You Are My Sunshine” over and over to her daughter.
“I love what I got to do with Rosalia, which was to be with her constantly. It was more skin on skin,” said LeBlanc recently, sitting next to her 11-month-old daughter. “Being able to have her with me the whole time, and knowing that I was kind of helping her through everything, it made me feel a lot better.
“That child never left me,” she said. “Just knowing I was her comfort was the best feeling.”
LeBlanc and Rosalia went home after six days in the hospital.
“The child is part of this unit,” said Dr. Cliff O’Callahan, a pediatrician who is the director of nurseries at Middlesex. “Our previous way kind of broke that all apart. Parents were less involved and nurses were taking care of the babies for the most part … and then the baby was thrust back into a family unit that was ill–prepared for them.”
“We are empowering these fragile families to use their inherent ability to provide the love and nurturing that their infant needs,” she said. “The birth of a baby is a window of opportunity to capture the strength that they need to stay on a clean road and provide what their infant needs.
“These infants are spending less time in a hospital where many things can impact their growth and interfere with bonding,” she said.
Since November, Middlesex has had about 30 babies born exposed to opioids, and none have needed morphine.
Pittari said that morphine is used to treat symptoms of narcotic withdrawal in adults. The dose is slowly tapered down and eventually can be discontinued.
“Withdrawal symptoms in babies have historically been treated using medications due to the fear of seizure activity,” she said. “However, there has not been any documented and proven seizure related to untreated withdrawal in the neonatal population.”
In 2012, Middlesex saw seven babies exposed to methadone. The average length was 25 days. From January to July 2017, only two babies have been born exposed to methadone, but their average length of stay was five days.
In 2012, the average length of stay for babies, like Rosalia, exposed to buprenorphine, was seven days. That year, two babies were born exposed to that medication. From January to July 2017, seven babies were born exposed to buprenorphine and the average length of stay was five days.
Yale and Middlesex aren’t the only ones focused on NAS in Connecticut. The Connecticut Hospital Association has brought together a group of doctors, nurses, other health care providers and public health experts to discuss NAS. Their first meeting was last spring, and included a presentation from Grossman.
“I have yet to see an initiative have this much uptake and have people so very excited to do something,” said Dr. Christopher Morosky, an associate professor of obstetrics and gynecology at UConn School of Medicine. Morosky is also the co-chairman of CHA’s Connecticut Perinatal Quality Collaborative.
At UConn, Morosky said, they have started having babies and moms room together.
“These women are so highly stigmatized,” he said. “To hear your doctor say, ‘We need you; you are the baby’s treatment; you’re the thing that’s going to help your baby get through these next few days’ … it’s empowering for these families.”
The CHA group has set several goals: to increase rooming-in, to increase breastfeeding with eligible moms; and to reduce medication treatments.
Just over a dozen of the 25 hospitals with birthing centers have created NAS teams to implement these goals, and they will report their data back to the collaborative.
But change is not easy.
First, there are the logistics — do hospitals have the space to allow moms and babies to stay together?
And then there’s the stigma.
“I worry that it’s a big problem,” Grossman said. “Our job is respect the parents, and their job is to take care of their baby. It’s not our job to judge people.
“People don’t really choose to become an addict,” he said. “We need to find our compassion and empathy, and it’s completely counterproductive to do it any other way.”
For LeBlanc, she didn’t feel stigmatized while she was at Middlesex Hospital. The doctors and nurses treated her with respect and made her feel like a “normal person.”
“I didn’t want any of these people to look down on me, but I think they really went above and beyond to make sure I felt comfortable.
“I was treated like a normal mother would be treated and that was very empowering,” she said.