Caring for people and their babies in the opioid crisis

Jeannie Kelly didn’t go into obstetrics to become a specialist in substance misuse. But after discovering a drastic disparity in the way pregnant people with opioid use disorder (OUD) were treated on the US East Coast compared with those in the Midwest, her path changed.

At Tufts Medical Center in Boston, Massachusetts, she provided obstetric care for people with OUD as part of her residency and fellowship. Health-care workers at Tufts found that getting pregnant women into the health-care system, using medication to wean them off opioids and providing specialists who understood their specific needs decreased the likelihood of bad outcomes for parent and newborn alike.

But when Kelly moved to St Louis in Missouri, to take up a job as an obstetrician specializing in high-risk pregnancies at the Washington University School of Medicine, she found that the city’s health-care system was letting people with OUD down — especially those who were pregnant. “I was flabbergasted at the lack of resources,” she says.

When she arrived, there were few guidelines for treating pregnant women with OUD. No one was prescribing buprenorphine — a form of medication-assisted treatment used to help people break their opioid addictions, which she was accustomed to giving to pregnant people in need in Boston. Social workers “moved heaven and Earth” to get people into methadone clinics, Kelly says, but success rates were consistently low. There was no mental-health network to support the women, and health-care workers were frustrated and didn’t understand why patients couldn’t comply with treatment. “It was a bad set-up, and that’s very common for managing substance use disorders across the country,” Kelly says. “People like to say the system is broken, but it is operating just like it is designed to operate — in a very punitive manner based on what we think is morally acceptable or not. The system is set up for these patients to fail.”

Between 2010 and 2019, 11.4% of maternal deaths in the United States were due to substance misuse1. Opioid use during pregnancy can also cause a range of health issues for the baby, including premature birth, poor growth and birth defects. Babies can also be born with neonatal abstinence syndrome (NAS) — a condition that occurs when a baby withdraws from dugs that they were exposed to in utero. Further complications include placental abruption and sudden infant death syndrome.

It is a problem that is only becoming more common. Opioid use continues to rise across the United States, including among pregnant women. According to a 2021 study2, the number of women with opioid-related diagnoses at the time of delivery rose by 131% between 2010 and 2017. The number of newborns with NAS increased by 82% during the same period.

Public-health crisis

Kelly’s practice was ill-equipped to handle the rising number of people needing treatment. So in 2018, she created the Clinic for Acceptance, Recovery and Empowerment (CARE) in Pregnancy in collaboration with Barnes-Jewish Hospital in St Louis. The clinic provides multidisciplinary care for mothers with substance use disorder and their exposed newborns.

When she first suggested the CARE clinic, colleagues and administrators bristled at the idea. Her bosses questioned whether they wanted to actively attract this patient population. Her obstetric colleagues who specialize in high-risk pregnancies preferred to use their skills on more attention-grabbing things such as performing in utero surgeries. “They wanted those cases to publicize,” she says. But this work was just as important.

Kelly’s idea was well received by others. The perinatal behavioural health team was treating depression and anxiety in women with other high-risk conditions. This group, and the neonatal team treating the rising number of newborns with NAS, were all seeking a better way to support families.

The expertise needed to treat these people was at her fingertips — she just had to meld it together. Instead of patients having to see a dozen different departments, Kelly created a place where the teams were in one location. When a person connects with CARE, they have access to maternal–fetal medicine specialists, a mental-health-care team, social workers, a nurse practitioner, peer support from other mothers and a nurse navigator who helps to advocate for them and guides them through the system. For many people, this is their first-ever contact with the health-care system.

“Some have had no health care their whole life because they had no access to Medicaid until they were pregnant,” says Kelly. State-run Medicaid programmes provide health insurance for certain low-income groups, including pregnant women. Many of the people treated at CARE arrive as active users of opioids and often have conditions such as hepatitis C and HIV from intravenous drug use, as well as mental-health illnesses. “We are trying to cram a lifetime of health care into a 30-plus-week time period when they have health insurance and can see a doctor,” Kelly says.

Pregnancy is also an ideal time to engage women with OUD and help them to become sober, she says. Knowing they could harm their child through exposure to drugs might be the push a person needs to quit. “If we can use pregnancy as a time to treat mothers, improve their quality of life, help them to regain stability and become active participants in their community, there are long-term positive benefits for the community and the whole country,” Kelly says. “These mothers have some vitality and perseverance I have not seen in other individuals.”

Search for treatment

CARE works with mothers for up to 3 years after childbirth — well beyond their 60-day postpartum Medicaid eligibility. Most pregnant women with OUD don’t have access to this kind of health care.

The American College of Obstetricians and Gynecologists (ACOG) recommends treating pregnant women with OUD by giving them methadone or buprenorphine, to wean them off of opioids. This medication-assisted treatment has been shown to reduce premature birth rates and improve health outcomes of both the mother and newborn. It can also help to reduce the misuse of drugs during and after pregnancy, along with activities that can lead to infections such as HIV and hepatitis.

“The data here are limited, but the postpartum period has a high risk for relapsing, overdosing and death from use,” says Bridget Galati, a psychiatrist on the CARE team. “Mothers engaged in treatment are also more likely to retain custody of their kids at birth, which is a huge benefit for the whole family.”

Dimly lit hospital room with a newborn baby lying in an incubator. Above him, a screen shows his vital signs.

Some newborn babies have withdrawal from substances they encountered in the womb.Credit: Salwan Georges/The Washington Post via Getty

By contrast, medically supervised withdrawal (also known as detox) has extremely high relapse rates3 — as high as 90%. The Centers for Disease Control and Prevention says supervised withdrawal can increase rates of fetal distress, miscarriage and premature labour. However, only about 58% of women with OUD receive medication-assisted treatment4.

Part of the reason for this is logistical. Methadone can only be prescribed at a certified clinic, most of which are in large, urban areas. It must be taken daily and is typically administered on site. “Getting to a methadone clinic can be hard — there are two in St Louis for the entire area — and you have to go at 6 a.m. every day and line up,” Kelly says. For pregnant women, or those with a newborn, this can be difficult. “I can’t imagine schlepping kids to those clinics,” says Kelly.

It can also be difficult to find a physician willing to provide treatment for pregnant women. Obstetricians are typically hesitant to treat addiction, but addiction specialists are often uncomfortable treating people while they are pregnant. In 2020, Kelly and her colleagues attempted to contact each of the more than 1,300 buprenorphine clinics and nearly 100 opioid treatment programmes that provide medication-assisted treatment in Missouri and Illinois. Of those that they were able to reach (despite multiple contact attempts, 42% of buprenorphine clinics did not respond), 20% of opioid treatment programmes and 60% of buprenorphine programmes were not taking on new pregnant patients5. Clinics in urban areas had longer waiting times and were less likely to accept Medicaid patients.

Patients might also fear repercussions for admitting to opioid use while pregnant. Twenty-five US states require health-care professionals to report pregnant people with OUD to social services. Most of these states criminalize the condition, allowing women to be charged with child abuse, which discourages them from seeking treatment. In Missouri, substance use is only considered child abuse if parents test positive for drugs within eight hours of delivery and have also either declined treatment or have previously been convicted of child abuse or neglect. However, the CARE team is still required to contact social services after birth, even if the mother is undergoing treatment. Kelly says that the CARE team is upfront with women about what legal issues to expect during and after pregnancy. “We have a legal system and health-care system that are flawed,” says Galati. “This is a neurobiological, chronic disease, not a moral failing.”

Transitions in care

Although obstetricians are trying to ensure mothers get medication during pregnancy to treat OUD, neonatologists are working to reduce medication given to babies with NAS.

Long-term use of opioids during pregnancy leads to NAS in about half of all newborns exposed to the substance, but estimates vary and there is limited research regarding why some babies are not affected. Symptoms of NAS include tremors, seizures, irritability, sleep disruption, poor feeding and vomiting, and they can last up to six months after birth.

To help reduce the use of medications such as methadone, buprenorphine or morphine for babies with NAS, the field has slowly begun to move towards a programme of care called Eat, Sleep, Console (ESC), developed by Matthew Grossman at Yale New Haven Children’s Hospital in Connecticut. The treatment measures whether opioid-exposed newborns can eat well, sleep for at least one hour at a time and be consoled in ten minutes when upset. To help infants achieve these milestones, ESC uses breastfeeding, soothing with skin-to-skin contact, quiet and low-lit environments, keeping the baby in the same room as the parent and engaging family members to help the mother and the baby.

Grossman created ESC almost by accident. He worked in the Yale hospital unit with infants and toddlers in 2006 using the traditional approach to NAS care: the Finnegan Neonatal Abstinence Scoring System (FNASS). This tool uses a point system to track withdrawal. Newborns that score above a certain level are given medication to manage their symptoms.

FNASS is problematic for a couple of reasons, says Hayley Friedman, a newborn medicine specialist at the Washington University School of Medicine. Two nurses evaluating one baby can come up with different scores, for instance. And babies can be irritable, difficult to console or yawn frequently whether they are going through withdrawal or not, leading to some unnecessary drug treatments.

When Grossman was using this treatment system, babies with NAS would stay in the neonatal intensive care unit for up to one month. Babies without NAS typically stayed for just one or two days. Beds were limited, so Grossman began to slowly reduce the amount of morphine given to babies with NAS. He found they responded well to the change — the average stay dropped to 22 days. A colleague at a nearby community hospital noticed and asked Grossman to give a presentation. Grossman began doing research on the topic to prepare.

What he learnt was confounding. In NAS studies, newborns with similar drug exposures, FNASS scores and treatment regimens could stay in hospital for as little as 12 days, or as many as 75 days. The main variable was that some were also receiving nonpharmacological treatment. “It was just baby care,” he says. “And in studies, they sort of hand-waved that away because they were focusing on medication.”

So, in 2010, Grossman began what he jokingly calls the “least innovative improvement project”. “We imagined we’d never heard of NAS,” he says. “I asked, ‘What would we do if we had a crying baby?’ Use mum as medication. Keeping mother and baby together is good for both of them.”

Avoiding pharmacological interventions when possible allows babies with NAS to go home sooner — the length of hospital stays dropped to around six days after implementing ESC at Yale New Haven Children’s Hospital6. Treating newborns with medication requires longer stays because babies must be weaned off of it before going home. Medications also prolong withdrawal, Grossman says. Without medication, most newborns’ withdrawal peaks around day three or four, and the worst is over after that. When given medications, babies still had withdrawal, it just happened weeks later. In the ESC study6, the number of methadone-exposed infants treated with medication dropped from 98% to 14%. Costs to treat those babies went from US$44,824 to $10,289.

Hospitals across the country have reported similar results. Before implementing ESC in 2021, 51% of newborns with NAS at Penn Medicine Lancaster General Health’s Women & Babies Hospital in Pennsylvania, were admitted to the neonatal intensive care unit. After implementing ESC, that number dropped to 18% (see Researchers at the University of Pittsburgh Medical Center in Harrisburg, Pennsylvania, reported an average decrease in newborns’ hospital stays from 17.7 days to 5.9 days after implementing ESC7. According to the researchers, nurses said babies treated with ESC appeared less irritable, more composed and calmer.

This change in babies makes it easier for mothers to care for their newborns. Much like Kelly found with her colleagues, Grossman says there was stigma attached to these babies. They were difficult to care for and nurses were angry at the mothers for causing the babies to have NAS. As a result, mothers didn’t feel comfortable visiting their babies in intensive care at Yale New Haven Children’s Hospital. But, when the task of caring for the newborns is given to the families — with physicians and nurses acting as coaches and teachers — it reduces the burden on nurses and physicians and helps to set families up for success. “I’m really proud that the culture of care has shifted away from stigmatizing mothers’ behaviour,” Friedman says. “A majority of the time, these babies are full-term and healthy, and they happen to have opioid exposure in utero.”

These innovative treatment regimens have helped to change the mindset of many physicians, says Kelly, showing them that just like diabetes and high blood pressure, substance misuse is a chronic, treatable health condition. “People fall to fear and stigma when they don’t know what to do,” she says. “Our concept now is we are advocates for these patients who are doing their best to achieve sobriety. I feel like we are graduating a little army of substance abuse experts in obstetrics who are really passionate about this because they see such a dramatic change in patients now.”