BY JEN MILLER PHOTOS BY JAY FRAM
When Jeannie Kelly, MD, MS, a Washington University maternal-fetal medicine specialist at Barnes-Jewish Hospital, first arrived on the medical campus in St. Louis in 2016, she had already seen how opioid use can devastate a community. “I finished my training in Boston, where the opioid epidemic was exploding,” she says. While working there, Kelly saw addiction and overdoses. She was aware of the difficulties and dangers for pregnant women addicted to opioids, and the great risks to their babies. And she wanted to help.
Kelly knows first-hand that these moms need special care — and she understands that shaming pregnant women for addiction can often lead to unnecessary tragedy.
It’s more productive to think of addiction as a disorder. In fact, the medical community has a term for it: OUD, or opioid use disorder. Kelly says, “Clinicians think of OUD as a chronic health problem that is going to have periods of better control and periods of relapse,” Kelly says, much like a person with high blood pressure or diabetes experiences changes in the control of their disease. “We don’t throw mothers with diabetes into jail for not using their insulin. OUD is a disease that can be treated; we don’t want moms or their babies to be sick.”
OUD: an overview
In 2017, 1.7 million people in the United States suffered from substance abuse disorders related to prescription opioids, and 652,000 suffered from a heroin use disorder, according to the Centers for Disease Control and Prevention (CDC).
And in 2017, 47,000 Americans — 130 a day — died after overdosing on opioids. The Midwest region has been particularly hard hit, with opioid overdoses increasing 70% from July 2016 to September 2017, according to a recent study published in the Journal of the American Medical Association.
JEANNIE KELLY, MD, MS, AND BRITTANEY VAUGHN, RN
As OUD has spread, so have its effects on pregnancy. The number of women with OUD at the time of labor and delivery quadrupled from 1999 to 2014, according to the CDC. The National Institute on Drug Abuse reports that in 2014 about 32,000 babies were born with either neonatal abstinence syndrome (NAS) or neonatal opioid withdrawal syndrome (NOWS), a five-fold increase from 2004. Babies with NAS or NOWS go through withdrawal after birth, a process that can include symptoms such as tremors, seizures and fevers; extreme fussiness; trouble eating, breathing and sleeping; and diarrhea and vomiting.
Kelly notes that the epidemic also includes an uptick in the number of women who take fentanyl, an addictive synthetic opioid that’s 60 to 100 times more powerful than morphine.
Pregnancy and OUD
Pregnant women with OUD are at risk for a host of complications, including miscarriage, hemorrhage, high blood pressure, infectious diseases (if they share needles with others) and death.
The danger OUD poses to a fetus isn’t necessarily caused by the opioids themselves, Kelly says, but if a pregnant woman gets her drugs from a dealer, the substances mixed with them can result in fetal harm. “The stuff sold on the street is usually mixed with other things — cocaine, perhaps, or methamphetamine. We know those drugs do cause adverse outcomes for the fetus,” Kelly says, including miscarriage, birth defects, growth restriction and tearing of the placenta.
Many pregnant women with OUD also have mental health disorders, including depression, anxiety disorder and bipolar disorder. OUD can make a mental health disorder worse — and addiction can be exacerbated by mental health disorders.
“The medical community has long been treating women with mental health disorders who are pregnant or postpartum, and many of them also have substance abuse disorder,” says Cynthia Rogers, MD, a Washington University child psychiatrist at St. Louis Children’s Hospital.
The challenge of treating a pregnant woman with OUD and a mental health disorder is twofold. First, the woman must acknowledge her addiction.
“Moms who are suffering from addiction have a lot of obstacles to overcome before they get treatment,” says Rogers. “Admitting they have an addiction is one of them. Being ready to accept treatment is another.” And one of the primary deterrents to this step is fear, she adds. Many of these women are afraid that acknowledgment of a mental disorder will result in the loss of their children through legal intervention. An admission of addiction presents the same threat.
“We want to help moms understand that if they are engaged in treatment for OUD, they are actually more likely to be able to parent their children,” Rogers adds.
The second challenge to OUD treatment is coordinating a care plan that will help a woman manage her pregnancy while also receiving treatment for OUD and any mental health disorder.
“Doctors and other providers who take care of people with OUD are often uncomfortable treating pregnant women. And many obstetricians are not yet prepared to treat OUD,” says Kelly.
And managing pregnancy, OUD and mental health problems simultaneously is challenging, especially if a woman’s care team is spread across several health care systems.
In St. Louis, one of the answers to this complex problem is the new CARE Clinic, a treatment program offered by the Women & Infants Center, a collaboration by Barnes-Jewish Hospital, Washington University Physicians and St. Louis Children’s Hospital. Kelly, medical director for CARE, was instrumental in the development of the clinic. She works alongside maternal-fetal specialists Ebony Carter, MD, MPH, and Molly Stout, MD, MSCI.
THE CARE PROGRAM IS DIVIDED INTO TWO PHASES: CARE IN PREGNANCY, WHICH FOLLOWS WOMEN THROUGH PREGNANCY TO 60 DAYS POSTPARTUM, AND CARE WITH BABY, WHICH THEN FOLLOWS MOM AND BABY FOR TWO YEARS.
CARE, which stands for Clinic for Acceptance, Recovery and Empowerment, opened in 2018 and to date has treated 60 pregnant women who have OUD. In October, the clinic was recognized with a Standing Up For Moms and Babies Award from Generate Health, a St. Louis-based organization that works to advance racial equity in pregnancy outcomes, family well-being and community health in the region.
One of CARE’s significant strengths is that it puts all treatment that mom and baby need in one place, with their care coordinated by a unified and compassionate team. Women are referred to the clinic by their physicians, or they can self-refer. Once admitted into CARE, they are diagnosed with OUD and can then begin treatment with opioid-agonist pharmacotherapy — an opioid replacement therapy that substitutes buprenorphine, also known as Subutex, or a combination of buprenorphine and naloxone, known as Suboxone, for opioids. Neither drug affects the fetus, though the risk for NAS and NOWS remains, Kelly says.
This kind of drug therapy is not uncommon; in fact, it’s recommended by the American College of Obstetricians and Gynecologists, the American Society of Addiction Medicine and the World Health Organization.
The process of detox — stopping all use of an addictive substance without the aid of a prescribed replacement drug — is also an option, but not one Kelly recommends to most of the women she treats. “People who undergo a prolonged withdrawal can feel terrible and still have cravings, and many of them still are living in an environment that can trigger relapse,” Kelly says. Women going through detox while pregnant have a 91% chance of relapse, according to a 2018 study published in the journal Obstetrics and Gynecology.
At CARE, women also receive treatment for mental health disorders, which may include psychotherapy and medication management, says Rogers, who also is director of the Washington University Perinatal Behavioral Health Service, which serves as the mental-health and social-service armof the CARE team. “For instance, if a woman has depression and an additional mental health disorder, she may receive psychotherapy that uses cognitive behavior therapy or interpersonal psychotherapy to treat the disorder, as well as antidepressant medication for depression.”
CARE also offers its patients referrals to a number of social-service programs, including home visits with a nurse, parenting support services, in-home psychotherapy, legal services and support for survivors of intimate-partner violence, says Rogers. And they receive thorough prenatal and neonatal care. Most of that care is the same as for women without OUD, with three significant exceptions.
Every woman in the CARE program meets with an anesthesiologist to talk about pain-control options available to her during labor and delivery, an important conversation for someone recovering from addiction and striving to avoid relapse.
WE WANT TO HELP MOMS UNDERSTAND THAT IF THEY ARE ENGAGED IN TREATMENT, THEY ARE ACTUALLY MORE LIKELY TO BE ABLE TO PARENT THEIR CHILDREN.
Another important conversation takes place with a neonatologist, who talks about what might happen after delivery. Infants born in the CARE program receive drug testing after birth, and Missouri law may require the results to be reported to the appropriate state agency.
“If the drug test comes back positive for opioids — a result that would indicate the need for replacement medications prescribed as part of treatment” — those results must be reported, Kelly says, and the state, then, initiates a report about the presence of OUD that may require any children be removed from the mother’s care. Ultimately, Kelly adds, the CARE team is not involved in these decisions. “But being in a treatment clinic such as CARE is a significant argument for continuing custody of her children.” Kelly and others on the team do work to help their patients understand the potential for legal action. And, she says, they want to help moms understand the impact of giving birth to a baby with NAS or NOWS, which is an important part of their recovery.
THE CARE TEAM INCLUDES, FROM LEFT TO RIGHT: KRISTA JARVIS, STAFF THERAPIST; CYNTHIA ROGERS, MD, CHILD PSYCHIATRIST; BRITTANEY VAUGHN, BSN, RN, NURSE; AMALY YOSSEF, CLINICAL RESEARCH COORDINATOR; AND JEANNIE KELLY, MD, MS, MATERNAL-FETAL MEDICINE SPECIALIST, AMONG OTHERS.
Prenatal and postnatal care also includes talking with moms about the possible need for post-delivery medical intervention for their babies, who are monitored in the hospital for five to seven days after birth — or longer if need be — for signs of NAS and NOWS. If either condition is present, newborns receive the care they need.
“Mom is the treatment for NAS and NOWS,” says Kelly. After delivery, each mom is encouraged to breast feed and share skin-to-skin time with her newborn. If an infant experiences severe withdrawal, Kelly says, “placement of a morphine drip will help with the worst symptoms.” And if an infant must be cared for in a neonatal intensive care unit (NICU), baby and mom share a private room. Newborns diagnosed with NAS or other problems are referred to a neonatologist.
The CARE program is divided into two phases: CARE in Pregnancy, which follows women through pregnancy to 60 days postpartum, and CARE With Baby, which then follows mom and baby for two years.
The first 60 days after birth are especially vulnerable, Kelly says. “This is a difficult time for most women, and that’s especially true for our moms, who may have concurrent psychiatric diagnoses that flare up postpartum.” The CARE With Baby program transitions moms from obstetric to psychiatric care. During this second phase of the program, women continue to receive medication for addiction, as well as mental health care.
Protecting family and community
CARE is still new, so outcomes are not yet available. But Kelly says that CARE and clinics like it are desperately needed. “We are treating an epidemic that is getting worse, not better.”
The consequences of leaving a pregnant woman with OUD to fend for herself are dire. “If her fetus is untreated, it is at risk for withdrawal and death. And if she is untreated, she will likely continue her addiction, a disorder that will expose her fetus to fentanyl, methamphetamines, cocaine and other substances mixed with opioid drugs,” says Kelly. And people with OUD may participate in risky and illegal behaviors that hurt themselves and those around them.
In other words, one of the significant consequences of untreated OUD is a community at risk.
Kelly and Rogers both note how proud they are of the women they treat through CARE. Kelly adds, “CARE offers treatment that works, and pregnancy is a huge motivator. It can cause women, who otherwise might not, to come forward and seek medical treatment.”