Back in 2014, Linda Jablonski and her fellow nurses at The Birthplace made a startling observation: the percentage of substance-exposed newborns had nearly doubled since the previous year. Seven percent of the newborns delivered in their midwifery-based maternity care practice at Baystate Franklin Medical Center in rural Franklin County, Massachusetts were substance-exposed—a rate three times greater than the state average. So in 2015, the nurses partnered with organizations across their county to launch the community-based program EMPOWER: Engaging Mothers for Positive Outcomes With Early Referrals.
“Being pregnant with a substance use disorder is a complex situation. It’s not just that you need help from your OB provider, you need a whole team,” Jablonski said.
The program connects women to a licensed mental health counselor who will coordinate their care, a recovery coach, a doula during pregnancy and a few weeks postpartum, and home health care workers. The doulas and coaches are all people who can share their lived experience of recovering from substance use disorders. One of the most important parts of their program is the pregnancy plan.
“It’s a menu of support. We realized a lot of women didn’t know what to expect, so our goal is by the time they have the baby, they have a support team in place and know what to expect.” Massachusetts recently adopted their plan model after Jablonski and her team presented it at the state level.
Yet often, taking the first step can be the hardest.
“There are several really huge barriers. The first is the disease of addiction itself, people still being in drug-seeking mode. Also, a lot of substance use co-exists with mental health issues. With depression, it can be hard just to get out of the house. And the complex healthcare system can be a barrier in itself,” Jablonski said.
Baystate Franklin Medical Center is small: its four maternity-care providers only deliver 400 babies a year. The team’s first step was creating and implementing a screening and referral program in the hopes of identifying women who needed help with drug use earlier in their pregnancies.
“Doctors wanted to screen, but didn’t know how to refer patients; some didn’t know how to respond to women who disclosed,” said Jablonski, who has worked at the hospital for 32 years and is now an assistant nurse manager. They landed on the “5 P’s” screening tool. It asks: Do your parents have a substance-use problem? Does your partner? Do your peers? Have you used in the past? And presently?
But before providers could begin screening, they needed a protocol: a set way to respond if the answer to any of the questions was ‘yes.’
“There’s nothing worse than a mom saying ‘Yes, I used cocaine last night’ and a provider not knowing how to respond,” said Jablonski. “Sometimes the provider will judge someone who discloses, becoming a barrier themselves. For a woman who is pregnant to say ‘I need help, I’m using,’ that’s courageous.”
Since studies have shown that the likelihood of disclosure increases when you ask the questions multiple times, the screening is used at the first prenatal visit, at 28 weeks, and at the postpartum check-up.
“You’re building trust over time. When you ask everyone these questions it’s de-stigmatizing. We’re also planting a seed for when this person is ready to disclose,” said Jablonski.
Franklin County is just one example of the rapid rise in substance use disorders among pregnant women nationwide. Between 1999 and 2014, opioid-use disorder (OUD) quadrupled among pregnant people in the U.S. Subsequently, a baby is born with neonatal abstinence syndrome (NAS) every 25 minutes. These stark increases are disproportionately affecting rural residents. From 2004 to 2013, the incidence of both NAS and maternal OUD increased more rapidly in rural counties: going from 1.4 to 4.8 per 1,000 births in urban areas, but skyrocketing from 1.2 to 7.5 per 1,000 births in rural areas.
In some areas of the country, non-medical substance use during pregnancy is an epidemic. In the rural Appalachian area of Eastern Tennessee, the NAS rate was 28.5 per 1,000 live births in 2014. In Kentucky, NAS cases tripled between 2008 and 2014. Its rural NAS cases number 38.9 per 1,000 live births: an increase 2.5 times higher than that seen in the state’s urban counties. And all opioid treatment facilities in Kentucky were found to be further away from rural patients than urban patients.
Disclosing a substance-use disorder and obtaining referrals for treatment are just the first hurdles patients must overcome. Lack of transportation, inability to get time off work, distance to providers, lack of childcare, homelessness—these are all common issues faced by women in rural areas.
“It doesn’t matter how many referrals you have, if you don’t have a car, you’re not getting there,” said Dr. Katy Kozhimannil, who is the director of the University of Minnesota Rural Health Research Center and a co-author of several of the national studies cited above.
Kozhimannil says in rural areas “there are broader issues of disconnect, of not having healthcare and community infrastructure, no support groups, lack of mental health services, fewer folks who are waivered providers of MAT [Medication Assisted Treatment]. These are exasperated many times over for pregnant people because we are also seeing declining maternity provider numbers. So if you have a specialized need for mental health treatment during pregnancy, you’re out of luck.”
One way EMPOWER is helping overcome these barriers is by having doulas and recovery coaches available to drive women to appointments, and home healthcare workers to bring care straight to them. Rural residents are also much “more isolated, and there is less sense of community,” Jablonski said. “A lot of these women have made good decisions, have separated themselves from friends who are still using, but that means now they are even more isolated.”
In addition, all of Baystate Franklin Medical Center’s maternity physicians are now waivered to provide MAT. The opioid-replacement therapy drug buprenorphine helps wean people off of opioids by blocking the effects of other narcotics and reducing the risk of withdrawal symptoms. MAT is the recommended treatment for pregnant women. Detoxing without opioid replacement therapy is shown to increase the risk of relapse among pregnant and postpartum women. Unfortunately, not all providers understand that for these women, MAT is the safest path forward.
“There’s a stigma to MAT in pregnancy, a stigma to using any drugs in pregnancy. If providers don’t know the science, they are often pro-cold-turkey,” said Kozhimannil.
Successful implementation of federal legislation looking to expand addiction treatment options for pregnant women and improve care for substance-exposed newborns has been stifled by the intense rurality of the problem. Most of the money earmarked for specialized services for moms with drug use disorders and their newborns are going to major urban hospitals. With NAS, there are higher rates of preterm birth and infants can experience respiratory problems and high irritability, and often require a NICU stay.
According to Kozhimannil, research and clinical initiatives related to maternal OUD and NAS—even those focused on rural communities—are predominantly housed in urban teaching hospitals with expertise in these conditions. But that’s not where these women are giving birth. When they examined the data, Kozhimannil and her team were surprised to find that more than 60 percent of rural moms with OUD were giving birth in rural hospitals, which are not receiving resources to treat these specialized cases so are often not equipped to handle them.
“Some of those dollars coming down the pike need to go to rural hospitals,” Kozhimannil asserts.
Kozhimannil and Jablonski both stress that treatment needs to keep moms’ needs at the forefront.
“We really focus on babies—and babies are important—but we also need to look at moms, at what they are going back home to. Programs have to ensure continuity of treatment during the postpartum period,” Kozhimannil said. “Pregnant people are very highly motivated, but the highest rates of relapse are in the postpartum period.”
The year after birth is indeed the most deadly for new moms with substance use disorders. And the immediate postpartum period is also when a lot of people lose Medicaid eligibility: those who qualified under the expanded income threshold during pregnancy will lose coverage 60 days after giving birth. More than half of all births in rural areas are to people on Medicaid. So now even if they can afford new insurance, patients will be navigating a new plan, which may involve different providers and deductibles.
Whereas EMPOWER used to only be able to support pregnant women up to a few weeks after birth, now, after receiving an additional grant, they can offer more in the way of postpartum and parenting support by opening their services up to women with children up to 36 months.
While only a few states still criminalize non-medical drug use in pregnancy, lawmakers in Tennessee just proposed a bill that would leave women facing up to 15 years in prison for assault if it is determined that illegal narcotics used during pregnancy resulted in NAS or harm to the baby.
Jablonski says her clients’ biggest concern is not legal repercussions, but the involvement of the Department of Children and Family Services.
“The two most-asked questions I get from moms who participate in our program are, ‘Can I keep my baby?’ and ‘How can I help my baby; will they be OK,’” Jablonski said. “Our mission is to create a safety net to promote optimal health in pregnancy. So we asked: how can we build the best team support? What would that look like?” Now, the Department of Children and Family Services is one of their partners.
“The key to solving this issue is it has to be comprehensive,” Jablonski said. “You have to follow a mom from screening all the way through services, guiding them through all of the systemic barriers.”