March 24th, 2016
Thirty-five-year-old Barbara Galarza found out about her pregnancy seven-and-a-half months into it, when she attempted to check into a detox facility in New Jersey in 2003. A urine screen showed she was pregnant, forcing Barbara out the door. That facility, like most other drug treatment centers, did not admit pregnant women.
Methadone is the recommended treatment for pregnant women who use opioids, as quitting can threaten the pregnancy, but even that was a challenge for Barbara to access.
“I had to travel 45 minutes every day to the methadone program because none of the ones near my house would take me,” Barbara says. “It was just horrible.”
At the hospital, choices regarding her own health care were, again, limited: “Breastfeeding wasn’t even an option,” she says. “They were totally against it.” Staff explained to her that methadone in her breast milk might interfere with her son’s detox.
Christine Galarza, a friend of Barbara’s (their shared last name is incidental) who gave birth within the past year, says she too had to fight to get her son breast milk. A doctor and lactation consultant told her she was safe to breastfeed on methadone, but nurses would feed her baby formula even though she had pumped and bottled her own for him.
Both women complain of conflicting recommendations and insensitive comments from providers, and such experiences are not rare. Responses to pregnant women and new mothers who use drugs have prioritized punishment over treatment protocol, leaving them navigating an unpredictable, insufficiently evidence-based and often hostile patchwork of medical care.
“I neglected my teeth when I was using, so they’re not in great condition,” says Christine. “When people see me and they find out I’m pregnant and I’m on methadone and my teeth are messed up they’re like, ‘oh, she’s a drug addict,’ so they just would treat me differently, you know?”
During Barbara’s second pregnancy, in 2009 “The way the doctor treated me [at Lincoln Memorial Hospital in the Bronx], it was the worst experience of my life,” says Barbara, adding that the doctor made light of her pain during contractions, making comments like, “You could handle using drugs, but you can’t handle this? What, do you need some kind of painkiller?” She says her epidural did not come until she was 7 centimeters dilated (4-5 is typical).
On top of this, Barbara says a team of medical students were present for her delivery, “asking me if they could each put their hands inside of me to see what it feels like.” She says she was yelled at from the hallway—”‘Be quiet. Stop moving around. Don’t mess up the bed.’ I didn’t see any other women being yelled at like this.”
Staff started her daughter on formula without her consent, Barbara says, leading the baby to become habituated to the bottle nipple and unable to latch onto her own. “They didn’t even give me the option of breast feeding,” she says, until several days later, when a doctor told her the benefits outweigh the risks of methadone transferring into her detoxing infant. “At that point, it was already too late. She was on formula for almost a week. She wasn’t taking [my nipple].”
NAS: Lack of Protocol Leaves Doctors “Winging It”
Neonatal Abstinence Syndrome (NAS) is a diagnosis of symptoms related to opioid withdrawal among infants whose mothers used opioids during pregnancy. Diagnoses have been increasing in recent years. In Tennessee, the first state to use its legislature (South Carolina and Alabama have used their courts) to craft a law explicitly allow women who use drugs during pregnancy to be criminally prosecuted, NAS diagnoses increased fivefold between 2000 and 2012. About 80 percent of those cases involve a legal prescription to opioids.
The idea that vast numbers of pregnant women are putting their infants at risk by using drugs like heroin is misguided; nationally, about 5 percent of pregnant women report use of illegal drugs (mostly marijuana) during pregnancy. Nonetheless, media hype has crafted a narrative of disgust around parents of babies with NAS, and doctors are not immune. In some cases, draconian responses to NAS make the treatment itself hazardous.
“If you don’t have a protocol or a treatment in mind then you’re kind of just winging it,” says Dr. Stephen Patrick, a pediatrician and NIDA-funded NAS researcher at Vanderbilt University. And when you’re winging it, there is more room for bias to seep into diagnoses and evaluations thereafter. Without strong protocol, an NAS diagnosis is discretionary, and so are measures related to treating and tracking the progress of the syndrome. When infants are exposed to haphazard medical care, they may receive “treatment” that is unnecessary and potentially even harmful.
Despite the resistance to breastfeeding experienced by Barbara and Christine, breastfeeding a baby diagnosed with NAS has been proven safe and even beneficial by researchers with expertise in the area.
According to the Substance Abuse and Mental Health Administration, “For women who are not HIV-positive and who are on methadone, breastfeeding is the best option…The benefits of breastfeeding often outweigh the effect of the tiny amount of methadone that enters the breast milk.” The American College of Obstetricians and Gynecologists and American Perinatal Association have also endorsed breastfeeding during pregnancy, though the latter did so with some reservations. “[Recommendations for breastfeeding] changed over time, although not everyone has gotten the memo on that,” says Dr. Matthew Grossman, a pediatrician who works with babies with NAS at Yale University. When medical providers harbor judgements about their patients, disdain can dictate treatment that is not medically sound.
Dr. Patrick says this emotionally-induced variation in protocol from hospital to hospital—and nurse to nurse—is to the detriment of families.
“I think it’s absolutely essential that you have a policy in place around breastfeeding,” Dr. Patrick says. “Not only is it safe to breastfeed, it promotes bonding between the mother and infant. It’s associated with lower clinical signs of withdrawal from the infant, and shorter hospital stays too.”
Breastfeeding is one of several areas where families with a baby diagnosed with NAS may receive a confusing and unhelpful patchwork of advice. Dr. Patrick and several other physicians interviewed for this article pointed to research finding that simply having a well-established protocol in place at a hospital can improve NAS outcomes.
Sloppy Diagnoses and Dangerous Bias
Part of the challenge is establishing a consistent method for diagnosing babies with NAS. Called the Finnegan score, the current tool to diagnose NAS was invented by Loretta Finnegan in the 1970s. It modernized treatment of newborns exposed to opioids in utero by providing a list of symptoms (with scores ranging from one to five) for which doctors could check their infants. The doctors would then tally up the scores for a total that was used to determine the need for treatment.
While the Finnegan score’s neat placement of symptoms into an easy-to-read list once revolutionized the field, it is also subject to stereotypes and bias, and may create variable scores from nurse-to-nurse. Bias can influence whether behaviors typical in any baby—yawning, sneezing, and excessive sucking, for example—are marked up as symptoms of NAS. Nurses convinced of an infant’s NAS and upset by a mother’s behavior during pregnancy may overstate the severity of NAS, and treat according to their own bias.
Media attention around NAS, coupled with inaccurate representations of the diagnosis, do not help. The rising rate of babies born “addicted” to opioids has spurred widespread panic about the opioid epidemic’s “most vulnerable victims.” When the newborns are the “victims,” the mothers are the villains, and the purported solutions that follow position the mother as a threat to her fetus—rhetoric that is dangerous from a public health perspective.
The medical community is united in its consensus that punitive policies around drug use during pregnancy go against the interest of public health. Every major medical organization—including the American College of Obstetricians and Gynecologists—has come out and opposed these measures. But stigma around drug use during pregnancy is affecting the treatment mothers receive, and is no good for their fetuses either.
A viral video shown in a Reuters investigation titled “Helpless and Hooked,” for example, shows an infant suffering from opioid withdrawal, with legs trembling so severely that the video required a “warning: graphic content” advisory. The clip made its way into the Tennessee statehouse, where legislators debated reissuing a “fetal assault” law allowing for up to 15 years in prison for a mother whose baby was born “harmed” by drug use during pregnancy (it did not pass in committee this week).
What Moms Need
Physicians in this field stress the importance of careful language to encourage women to feel comfortable and beneficial to their babies, rather than as if they are threats. A baby cannot be born “addicted,” they say, despite headlines declaring as much. Treating a mother as though she is a threat to her child does not protect the baby, but jeopardizes a potentially loving relationship.
“The first thing we say is congratulations, this is wonderful,” says Dr. Grossman, “We try to be very supportive and tell them they’re doing great and they can do this. We can help, but you have everything your baby needs.”
Dr. Grossman describes it as “cheerleading,” or “letting them know what their babies’ needs are, and that they are able to meet them.” A recent study out of San Antonio underscores the importance of Dr. Grossman’s approach: It found that as nurses better understood addiction and mothers felt less judged and trustworthy of them, NAS outcomes improved.
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What’s more, providers like Dr. Grossman are moving away from the clinical, intensive treatment models in place for the last 40 years. When babies with NAS are treated more like your “typical” baby, their treatment outcomes improve, Dr. Grossman says. In short, he explains, if a baby with NAS is crying out, pick the baby up and hold it, feed it, or attempt to soothe it. Chalking up any sign of distress to a mother’s drug use during pregnancy is of little use.
While it is common for newborns with NAS to be placed in the Neonatal Intensive Care Unit and offered a treatment regimen including morphine (the dosage and drug cocktail varies), Dr. Grossman is focused on keeping moms and babies together in the same room, and moving away from medication. Once babies born with NAS are put in the Neonatal Intensive Care Unit, the diagnosis can become self-affirming: The chaotic environment and separation from mother exacerbates symptoms of NAS and strains the relationship between mother and baby.
To Barbara and Christina, rooming-in would have made their deliveries less traumatizing and more celebratory.. “I had to call a nurse to come get me to escort me to see my baby every single time I wanted to see her,” Barbara says.
Christine would show up as soon as visiting hours opened and stay until they sent her home, but was sometimes told to wait by nurses who would offer reasoning like “The baby is sleeping.” She had lost a baby to SIDS before, and would cry and plead to hold her son.
“I wanted to be with my son all the time. I gave birth to him. I created him. i wanted to be the one taking care of him,” she says. “I don’t care if he’s sleeping, I want to look at him while he’s sleeping.” She was upset to overhear the way nurses talked about her child as a “boarder baby”—meaning a baby kept after the mother is discharged.
Christine says she was drug-tested every time she went to the doctor, and that nurses were talking about screening her son when they called him a “boarder baby.” “I said ‘I have been clean three years and on methadone,” she recalls, “and you’re not gonna find anything in my son’s system except methadone. Yes, I understand my teeth are messed up, which was due to me neglecting them while I was using… but I’m not a scumbag and I don’t deserve to be treated like that.”
“We know that getting infants out of the NICU, creating an environment where mom and baby can be together…and making sure providing aggressive non-pharmacological care first is good for baby development and increases patient satisfaction,” Dr. Patrick says. But what we know is not always what we practice.
“What we really need is some consensus among everybody as to best practices and best treatment strategies,” says Dr. Lauren Jansson, director of pediatrics at the Center for Addiction and Pregnancy at Johns Hopkins University. “And funding. Funding for treatment, and funding for research.”
Laws like Tennessee’s are a diversion of resources; media reports that sensationalize NAS distract from real solution. Together, they endanger women and their fetuses by putting them odds at with the medical community.
According to the East Tennessee Children’s Hospital, the number of NAS newborns admitted to the NICU without having received prenatal care tripled in the time between July 2014, when the fetal assault law was enacted, and the spring of 2015. At a Tennessee hearing about the fetal assault bill last week, Dr. Patrick emphasized that because drug-screening at hospitals is not universal, and because NAS can take days to present symptoms, encouraging women to be open about their drug use is the best way to anticipate and treat NAS.
Barbara says that had a law been in place to charge her with a crime against her unborn baby, she would have fled the state or avoided health care. “I would be scared to go to the doctor,” she says. “I probably would hide my pregnancy until the end.”
Experts agree that women who use opioids during pregnancy need support and a streamlined standard of care. The problem is they are not deemed worthy of it.
Still, Barbara and Christine refuse to be ashamed. “I’m not embarrassed of what happened to me or what I had to do in my life,” Barbara says. “And if [sharing my story] could help a woman get through their process better and not be treated the way I was, I’m all for it.”
Kristen Gwynne is an associate editor of The Influence. You can follow her on Twitter: @KristenGwynne.