When Michelle Kavouras went into labor, she waited as long as she possibly could before going to the hospital.
“I knew what was coming,” she said. “I knew I wasn't going to be welcomed, given the situation that I was in.”
Kavouras was actively using cocaine when she was pregnant and made the decision to place her son for adoption. After the birth, she spent the night with the baby in her hospital room. He tested positive for cocaine and was placed in the neonatal intensive care unit. Kavouras recalls the doctor coming into her room shortly after.
“He was screaming at me, telling me, how can I do this to my baby, I'm selfish — things I already knew, didn't need to hear from somebody shouting at me,” she said. “And instead of offering me any kind of help or anything, just wanted to shame me and make me feel worse than I already did, which was pretty impossible.”
That was 13 years ago, and Kavouras doesn’t want anyone to have to experience what she went through. She’s been in recovery for six years and now works with pregnant women at PCC Community Wellness on the west side of Chicago.
People who are pregnant and struggling with addiction face many barriers to getting the health care they need. Many fear mistreatment from health care providers and worry about the possibility they’ll lose custody of their baby due to their substance use.
Substance use has been identified as one of the main drivers behind the nation’s high maternal mortality rate. Mental health conditions — including suicide and overdoses related to substance use disorders — account for roughly 1 in 4 maternal deaths in the U.S., according to a new report from the Centers for Disease Control and Prevention.
Some states are taking steps to help pregnant women who use substances access both prenatal care and addiction treatment and feel more supported on their recovery journey. And they’re getting help from people like Kavouras who know how challenging it can be.
A different kind of doula
Kavouras is a doula — someone who provides physical and emotional support to pregnant people before, during and after childbirth. As non-medical professionals, doulas help clients advocate for themselves in health care settings.
But Kavouras is more than just a doula. She’s also a certified peer recovery specialist: someone who has experience with addiction and helps other people on their recovery journey.
Numerous studies have shown that having a doula can improve health outcomes for both moms and babies. Women who receive continuous labor support are less likely to have a cesarean birth, and their babies are less likely to have low Apgar scores, a measure of babies’ health and well-being shortly after birth.
One small study involving women in recovery for an opioid use disorder found doula care reduced perceived stigma from health care providers and increased women’s perceptions of emotional support, health literacy and self-advocacy.
Kavouras’ work is part of a pilot program Illinois launched in 2019 to provide peer recovery doulas to pregnant women with substance use disorders. The program is funded by a grant from the U.S. Substance Abuse and Mental Health Services Administration.
The doulas do more than just assist patients during childbirth, said Dr. Ruchi Fitzgerald, a family physician and addiction medicine specialist who helps lead the peer doula program at PCC Community Wellness, one of the participating health centers.
Peer recovery doulas also help get clients to prenatal appointments, access addiction treatment and navigate the complicated health care and legal systems.
“They can be a very strong advocate for our patients ... preparing them for what to expect in a hospital setting, or possibly in family court,” Fitzgerald said.
The doulas also educate hospital staff on ways to reduce stigma, helping them understand "this is a person with a substance use disorder, this is not someone who has a moral failing,” Fitzgerald said. “We really want to promote a healing environment. And that's been the most rewarding part of our program.”
The pilot program is offered at five health centers across Illinois, and enrolled 242 women in its first two years.
At PCC Community Wellness, Fitzgerald said 51 people have worked with the peer doulas before or after birth in some capacity — like scheduling prenatal care, getting started on medication assisted treatment or enrolling in a treatment center.
Fitzgerald said it is difficult to measure the success of the program because a lot can happen after birth. Sometimes families are separated or people leave treatment.
“What we found is that we don't control all of the other systems,” Fitzgerald said. “And so we really try to have a public health approach, where we really focus on having the most healthy pregnancy and healthy birth in the hospital and then continuing to provide care to these patients, just like anyone else would receive care.”
The challenge of building trust
One of the biggest challenges peer recovery doulas face is building trust with clients, especially if they’ve been treated poorly in medical settings in the past.
That means the doulas have to work really hard to show they're on their team. But it’s a complicated issue.
In 24 states and the District of Columbia, substance use during pregnancy is considered child abuse. If a client discloses substance use late in the pregnancy, for example, or if a baby is born with drugs in their system, Illinois law requires it be reported to the state.
Both medical professionals and peer recovery doulas are mandated reporters. A report prompts an investigation by the state’s child welfare agency.
If a mother who uses substances hopes to keep her baby, she must go through the investigation and may need to appear in court, sometimes just days after giving birth. Showing that they’ve taken steps to get help for their substance use disorder can help their case but doesn’t guarantee they’ll be able to keep their child.
Carly Ann Braun worked as a peer recovery doula in Illinois for the past several years. She said some mothers worry that if they were to lose custody of their child, they’d start using substances again because they don’t know how else to cope.
“I’ve literally had a patient tell me, ‘The only reason that I’m not using drugs is because of my baby,” Braun said.
Trauma for moms, trauma for babies
Child welfare agencies have a mandate to do what’s in the best interest of the child. But it isn’t always clear what that means. For a child, being born with a chemical dependency can be traumatic, but so can being taken away from their biological mother.
Whether it leads to family separation, going through a custody investigation and regular child welfare checks can be a long and disruptive process, said Michelle Brachter Goodwin, a law professor at the University of California, Irvine.
“This may be something that takes place [over] months that actually flow into years until she satisfies the state that she is suitable to parent her children,” she said.
Goodwin said she understands why mothers are concerned about their babies being placed in foster care.
“There can be a lot of pain and a lot of abuse in those systems,” she said. “So now, not only has this mother been separated from her child, but now her children are also suffering in another kind of way.”
During her years as peer recovery doula, Braun said she has seen some judges choose to separate children from families even when the mother is engaging in recovery and treatment. She feels many within the criminal justice system, including judges, lack understanding of issues related to perinatal substance use disorders.
“They have no understanding of treatment, they have no understanding of trauma-informed care,” Braun said. She said for real change to happen, education on substance use disorders is key.
Even though it’s been more than a decade since she placed her son for adoption, Kavouras said it still pains her to think about it. Losing her child was hard enough. But the mistreatment by hospital staff was actually the most painful part of the whole experience.
She channels that into her work with her doula clients today. She teaches them something that took her a long time to realize: that they are worthy of fair and compassionate care.
“And when they finally realize it and then they can start advocating for themselves because they are deserving of it, it’s pretty awesome to watch,” she said.
It’s incredibly hard work, Kavouras said, but it’s worth it.
“I love to see when somebody is like, ‘Oh, wait, you guys are so nice to me. Why are you being so nice to me?’” she said. “And I get to tell them, ‘It's because you just deserve it.’”
This story comes from Side Effects Public Media — a public health news initiative based at WFYI. Follow Darian on Twitter: @HelloImDarian.