When she went to the hospital to give birth, Kimberly Byrnes was open and honest with the hospital staff about the fact that she was taking Subutex to treat her opiate addiction. She'd been on the treatment for several years and her medication was monitored by her doctor, but the hospital still opened an investigation with the Department of Children and Families (DCF) when her daughter was born.
"I go to deliver my daughter and immediately I have a social worker in there saying, 'Sign this. As soon as the baby's born, DCF is coming,'" she told Truthout. "And I had to battle with DCF to prove to them that I was doing exactly what I said I was doing [staying sober]. And it was very scary because it's like Big Brother almost, looking over, threatening: 'You make one wrong move, we're gonna take her.'"
In the end Byrnes was allowed to keep her baby, but the difficulty of the experience led her to seek out work supporting others in related situations as a "mentoring mom" for the Newborns Exposed to Substances, Support and Therapy (NESST) program in Massachusetts.
In Tennessee, a 2014 law allows women to be charged with assault if their babies test positive for drugs.
Washington State resident Megan McKenzie also endured the suspicion and stigmatization with which hospitals so often treat women with histories of substance use. McKenzie had decided to travel the country after completing nursing school, when she found herself unexpectedly pregnant in South Carolina. She says that when her daughter was born, she was accused by hospital staff of having smoked marijuana during her pregnancy after disclosing that she'd used marijuana to treat her depression in the past. During her pregnancy, she was treated for depression with antidepressants prescribed by her doctor.
Despite a negative drug test, McKenzie says she was arrested and charged with felony child neglect in the state of South Carolina. "My daughter was taken away from me and kept away from me for a week," she said.
"It took me two and a half years of standing firm to be able to have my charges dropped, and to be able to get my daughter back into my [legal] custody. My bonding was so interfered with that to this day, I'm trying to repair that. Seven years later, I still suffer from depression from what I went through."
The medical community's stigmatization of women suspected of using substances during pregnancy has devastating consequences. At the most extreme end of it, women are losing custody of their children and ending up in jail, and those women are most likely to be poor women of color. But even for women who don't lose custody of their children, the threat and stress that comes with being investigated by the state has negative effects on both them and their children.
Health-Care Providers' Attitudes Toward Drug Users
Where care providers could be bridging the gap by providing compassionate care and treatment to substance-using pregnant women in their practices, they rarely do. The medical community's suspicious and dismissive attitude toward drug users was on full display during the October 2 and 3 "Pregnant Women, Drug Use, and Neonatal Abstinence Syndrome" symposium in Nashville, Tennessee.
Over and over again during the symposium, medical professionals and lawyers speaking from the podium repeated stereotypes of drug users as dishonest, manipulative and combative.
Thankfully there was one panel at which four women with lived experience of the topic being discussed - Kimberly Byrnes, Jenn McCrindle, Casey Shehi and Shannon Casteel - had the chance to set the terms of the discussion. However, the insights of people with lived experience of drug use during pregnancy were marginalized in relation to health-care providers' discussions about how to address drug use in pregnancy.
Denicia Cadena, the policy and cultural strategy director for Young Women United in New Mexico, expressed concern about this dynamic. "While the expertise of doctors, of social workers, of lawyers, of district attorneys is critical, the people who most know what change is needed are people who have lived through the system," she said.
Jenn McCrindle, a pregnancy support worker with HER Pregnancy Program in Edmonton, Canada, who is recovering from an opiate addiction, said, "I'm a big supporter of the adage 'nothing about us without us.'" But while the medical and legal communities may have the "about us" part down, they are definitely doing it "without us," she added. Both emphasized the importance of listening to people with lived experience who can shed light on what works and what doesn't.
The Disproportionate Targeting of Women of Color
Mothers who use substances face varying degrees of criminalization nationwide, but the situation is particularly acute in the state of Tennessee, where a 2014 law allows women to be charged with assault if their babies test positive for drugs or show signs of neonatal abstinence syndrome, which affects newborns who were exposed to certain drugs while in the womb.
Criminalization is also acute in Alabama, where prosecutors are using a law originally intended to keep children away from meth labs to charge women with "chemical endangerment" of their babies. It's a story that Shehi knows all too well. As she shared from the panel, she tested positive for benzodiazepines after giving birth to her son and, even though his urine was clean, she was arrested and charged with "knowingly, recklessly, or intentionally" exposing her baby to controlled substances in utero by the state of Alabama.
"Harm reduction means that we don't assume that we know what's best for someone."
In these situations, women are being treated as criminals for using drugs, when addiction should be looked at as a health issue, not a criminal one. Cherisse Scott, founder and CEO of SisterReach in Memphis, Tennessee, said incarcerating people for an illness that needs treatment is not an effective or humane solution, and emphasized that women of color are disproportionately policed: Due to racial biases that affect assumptions about what kinds of women are likely to use drugs, women of color are more likely to be screened for substances in the first place.
As Scott points out, these systems do not criminalize all women equally. While four of the five white women mentioned in this article were involved with the child welfare system, none of them ever actually lost legal custody of their children, nor did they serve jail sentences, with the exception being Casteel. Contrast that with the case of Jamillah Falls, a Black woman who was the first woman of color arrested for assault under the new Tennessee law.
Falls had two options: treatment or jail. She attempted treatment but when she couldn't afford to pay the fees associated with living in the halfway house, she ended up taking the six-month jail sentence instead. Her child is currently in state custody. For Black women, the child welfare system and the prison industrial complex are often intertwined. As Dorothy E. Roberts writes in "Prison, Foster Care, and the Systemic Punishment of Black Mothers," many Black mothers end up imprisoned after their children are placed in foster care, "perhaps because losing custody of their children led to increased substance abuse." Once a mother is incarcerated, it becomes even more difficult for her to retain custody of her child.
Roberts explains that the child welfare and prison systems "function together to discipline and control poor and low-income black women by keeping them under intense state supervision and blaming them for the hardships their families face as a result of societal inequities." According to Scott, of the women targeted by the new Tennessee law, "many do not know how to navigate the court or child protective services dynamic and are more likely not to regain custody of their children. Most won't be able to afford an attorney and would have to rely on court-appointed counsel. Historically, that circumstance has not worked in favor of Black and Brown women."
Harm Reduction: A More Ethical Approach
One way to move away from the criminalization and traumatization of substance-using mothers is to adopt an approach based on the idea of harm reduction.
Dr. Heather Howard, a perinatal clinical social worker at Women & Infants' Hospital of Rhode Island, is doing research to support this approach. She completed her dissertation research on decision-making surrounding pregnant women who are opioid dependent. "I really wanted to understand: What is their role and their participation in the decision-making [regarding their treatment]?" she said. So often, treatment happens to women or it happens to babies and they're not involved as part of their care. This is why it's so important to give women a voice and input when it comes to their treatment, she added.
Many of the most innovative and effective programs are being led by women who have experienced addiction and pregnancy themselves.
Howard recognized that "so much of the literature leaves out the voice of the pregnant woman." And so she used qualitative health research for her study, which she says is about humanizing health care. She also chose to use interpretive phenomenological analysis, which she explains, "tries to understand lived experience of the participants of the study."
Howard found that substance-using women overwhelmingly have a great deal of concern for their fetuses and care about their babies deeply, but that they also carry an extreme amount of internal stigma. She said that they describe "the harrowing experience of feeling responsible and blaming and having guilt" and said that providers "don't need to add to that feeling, that's for sure." Kimberly Byrnes confirms this, saying, "We [addicts] have enough self-pity without you making us feel worse about ourselves."
Harm-reduction treatment models take this into consideration. According to Joelle Puccio, director of women's services at The People's Harm Reduction Alliance in Seattle, "Harm reduction means that we don't assume that we know what's best for someone. We assume that each person knows what's best for themselves, and we ask them. Meeting the person where they're at means that the person defines the problem, identifies the goals and chooses interventions that work for them. Our job is to provide information, resources and most importantly, encouragement."
Leading From Experience
Many of the most innovative and effective programs are being led by women who have experienced addiction and pregnancy themselves, and this is no surprise. Many women want to use their own experiences to help others. It's what brought Byrnes to NESST and McCrindle to HER Pregnancy. McKenzie is now an advocate for pregnant women in her home state of Washington, and Casteel dreams of opening a treatment center where women can go with their children.
McCrindle describes the work she does at the HER Pregnancy (which stands for healthy, empowered, resilient) as "women-centered." The program helps with food, shelter, clothing, medical and prenatal care, and whatever else the woman may need. Following a harm-reduction philosophy, she said that "basically anything that the woman identifies as a goal, our team helps support her to achieve it," whether that's finding housing, clearing warrants or simply making it to one prenatal appointment.
The NESST program provides case management, counseling and court advocacy, but Byrnes says that the biggest benefit for the participating mothers in the NESST program is the support they receive from their mentoring mom. She points to the fact that it offers "a light at the end of the tunnel" by showing them someone who has gone through the same thing and is OK. She says that it's so important that they have someone there believing in them because "if you're always told you're going to fail, you're going to fail."
And these programs are having a positive effect on the women who access them. Byrnes had three NESST moms who were able to close their Department of Children and Families cases and regain custody of their children. "They did it on their own, really. I was just there to be with them and to say, 'look, you can do this.' Having someone be there with them, it makes a difference," she said.
In Edmonton, 52 percent of the HER Pregnancy clients are currently parenting their kids, when it's estimated that without the program, only 5 percent would be parenting. And of the women who do not currently have custody of their babies, 70 percent had a say in what happened to their infants and where they were placed. "That in itself is very empowering for mom to have a say in what happens to her child," McCrindle said.
Howard's research backs that up. She stressed how powerful support is and how significant having someone beside you, helping you feel like you have the capacity for change, that you have parental capacity, that the baby needs you, can make all the difference for a woman on the margins.
"The more education these women get, the more support they get, the more apt they are to do the right thing," Byrnes said. "And they all really do want to do the right thing. None of us wakes up one morning and says, 'I want to be a drug addict today.' At least, I didn't."
Commenting on the HER Pregnancy program, McCrindle added, "People say that our program is very creative and it's very innovative and that's very flattering, but to us, it's just about being a respectful and kind human being and not judging people."
Finding New Solutions
So how can medical providers, lawmakers and advocates do a better job of including the voices of those most affected in the solutions going forward?
SisterReach's Cherisse Scott points out that "women are afraid to come forward, and understandably so. There are no resources in place to protect a woman if she does come forward and none to compensate her for her time while she is coming forward." Furthermore, she stresses that "in order to prove the disparities among poor women of color, we need more examples of women of color affected" by criminalization for substance use during pregnancy. She added that the one Black woman who could have discussed her experiences as a substance user during pregnancy at the recent symposium in Tennessee was not able to attend because she is now incarcerated due to the conditions the Tennessee law has perpetuated.
Denicia Cadena of Young Women United added that it's also important for the "experts" to start recognizing their patients as experts, too. "It's incredibly powerful and meaningful to have people with lived experiences moving these issues, but too often ... people are asked to share their stories and then other folks come in and share the 'expertise' of what they think from their field."
Shannon Casteel pointed out the irony in the way in which women who are pregnant and substance using are treated by their advocates and providers: "The current solutions don't work," she said, despite all the efforts by care providers, legislators and judges to come up with effective policies. And yet, these same providers consider women who are struggling with addiction to be the ones who don't understand their condition, when really, it's the providers who keep suggesting ineffective treatment methods and expecting them to work.