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When Christy discovered last year that she was pregnant, she panicked. She had finished a detox program for an opioid addiction just a few months before, but was still smoking pot and taking prescription painkillers from time to time. She knew she needed more help if she were to deliver a healthy baby. "I needed a safety net," she says. "I didn't want to use when I was pregnant."
Christy wasn't just being cautious; she was speaking from experience. Eight years ago, she was 21 and deeply addicted to opioids, abusing prescription pills such as Lortabs and Xanaxes even though she was attending a methadone clinic, which was supposed to help her with her addiction. It was during that time that she gave birth to her first daughter, whom she named Shelby, and whom she lost custody of to her own mother, Shelby's grandmother. "An addiction is stronger than a mother's love for her children," Christy says.
Losing custody of her daughter didn't change much for Christy, at least not right away. Despite the popular rhetoric about drug users "hitting rock bottom" and then turning their lives around, that's not the reality for many. "I didn't think about her," Christy admits. "I just thought about myself."
Over the next decade, however, Christy slowly started making progress. She had years-long periods of recovery, even becoming an Alcoholics Anonymous sponsor to other women. Though she relapsed when her stepfather died, one year later she went back into a clinic for treatment. When she found out last year that she was pregnant again, she looked for help right away. "I just didn't want it to happen again like with my oldest daughter," she says. The gynecologist Christy went to referred her to PATHways, an innovative, new program housed in a small University of Kentucky HealthCare clinic in Lexington, Kentucky. PATHways provides both prenatal and addiction care to mothers with substance use disorders. Women start with PATHways when they're pregnant; they stay in the program for at least two years after they give birth.
Baby Ryleigh—pronounced like "Riley," but with a more feminine spelling Christy prefers—is now four months old and lives in Georgetown, Kentucky, with Christy and Christy's fiancé. Ryleigh likes bananas and prunes and watching television, the latter of which is exactly what she's doing during one of my calls with Christy. As we talk Ryleigh sits in her high chair, Christy on her recliner. "I'm stable. I've got a nice place to live. I've got everything I need for my kids," Christy says. "If it wasn't for that program, I wouldn't have all this." Shelby, who lives in a neighboring city, often visits too. She and her mom go to Walmart together, so she can pick out Pokémon cards.
PATHways relies on the latest science to treat some of the opioid epidemic's most vulnerable victims. For example, PATHways doctors get women to swap out heroin or painkillers with an opioid called buprenorphine, a drug designed to reduce cravings in addiction, without getting users high. PATHways also allows moms to cuddle their babies after birth—a sharp departure from the old standard of whisking the newborns away.
With more and more Americans using both illicit and prescribed opioids over the past two decades, the number of women taking those drugs while pregnant has grown apace. Between 2000 and 2009, the proportion of pregnant Americans using opioids increased nearly five-fold, according to one estimate. Between 2000 and 2012, the percent of babies born with neonatal abstinence syndrome also increased almost five-fold. Neonatal abstinence syndrome is infant withdrawal, brought on when a baby is born and thus cut off from any drugs its mother was taking during her pregnancy. In 2012, nearly 22,000 babies were born in withdrawal in America, about one every 24 minutes.
"An addiction is stronger than a mother's love for her children."
Kentucky has been especially hard hit. In 2014, more than 1,000 infants were born in Kentucky with neonatal abstinence syndrome, an increase of almost 6,000 percent, compared to 2009. Kentucky now has a neonatal abstinence syndrome rate that's nearly three times the national average. At a conference this past spring, three of PATHways' founders—obstetrician Agatha Critchfield, psychiatrist Michelle Lofwall, and nurse Kristin Ashford—described scrambling to put together a program for the sudden influx of drug-using moms they were seeing. (PATHways' fourth founder, neonatologist Lori Shook, couldn't make the panel.) These women aren't alone in their professional struggle. "The rise of the opioid epidemic has caught communities and hospitals off-guard," says Stephen Patrick, a health-policy researcher who studies drug-using moms and their children at Vanderbilt University in Nashville, Tennessee.
PATHways shows what's possible in dealing with an epidemic that's increasingly involving new mothers and infants. And without programs like PATHways, the alternatives can be dire. Mothers may lose custody of their children to overworked relatives or the foster-care system. Even worse, if drug-using moms aren't identified or treated at all, they'll bring babies home they can't care for. In a recent story, Reuters identified 110 babies, born to opioid-using mothers in America between 2010 and 2015, who later died of neglect or abuse. One mother Reuters interviewed accidentally smothered her baby in her sleep after taking two prescribed opioids and a Xanax. None of the new parents in Reuters' cases were reported to child protection services before they were discharged from the hospital.
It's unclear how many programs like PATHways exist in the United States. Agencies such as the Substance Abuse and Mental Health Services Administration didn't answer requests for such numbers; in any case, every expert I contacted thought that data doesn't exist. Everyone said there need to be more programs. "[PATHways is] doing some really nice, trauma-informed, non-blaming, family-empowering kind of care, which is just incredibly laudable. There's unfortunately just not enough of that," says Alison V. Holmes, a pediatrician at Dartmouth-Hitchcock.
More such programs may open in the future. The Comprehensive Addiction and Recovery Act of 2016, the first major piece of addiction legislation in America in decades, authorized $181 million in new funding every year to combat substance use disorders, including programs for pregnant women. Most recently, the Substance Abuse and Mental Health Services Administration put out a call for applications to a $9.9 million pool of money for states to build services for drug-using pregnant women and new mothers.
At the same time, major reductions in Medicaid funding, like those proposed by Congress members seeking to repeal and replace Obamacare, may hamstring the programs that already exist. Almost all of the program managers I talk to say their patients mostly pay with Medicaid, which covers prenatal care.
Meanwhile, the demand keeps growing. After the PATHways founders were done speaking at the conference, a woman stood up immediately to ask the panel for advice on starting a program for pregnant drug users in Pennsylvania. The woman wanted ideas for getting the word out. "You don't need to advertise," Ashford, who runs PATHways' prenatal sessions, replied. Ashford added that the mothers talk and pass on information about programs they like. "If you build it, they will come. Because they are out there."
Soon after her second child was born, Christy noticed a difference in her two children. Shelby had cried inconsolably, Christy says, but Ryleigh has been easygoing, even though infants who were exposed to drugs in the womb can be fussy and difficult for months. "She came out cooing," Christy says. "She's a good baby. I got so lucky."
Internal numbers suggest it might not just be luck. More than three-quarters of pregnant women enrolled in PATHways aren't using any illicit drugs by the time they give birth—a testament to PATHways' effectiveness. As of April, only one had ever tested positive for unauthorized opioids before delivering. The more committed a mother is to the program, the less likely they are relapse: Every single group session these women attend is associated with a greater likelihood of being drug-free.
PATHways is a long-term program, ideally lasting years, and it involves numerous practices that aren't the norm in America—though not for lack of evidence. "In many cases, we know the right thing to do, but it's not occurring," Vanderbilt's Patrick says.
There are the group sessions moms attend, often weekly, which offer therapy, parenting tips, and peer support. (Christy: "I love the groups.")
There's the maintenance treatment with buprenorphine, an opioid that helps with withdrawal, reduces cravings, and aids folks with severe addictions to live stably. Maintenance treatment is important for pregnant women who are dependent on other opioids, such as OxyContin or heroin, because if they quit suddenly, it can cause fetal distress and miscarriages. Women who stop using opioids altogether while pregnant are also at risk for relapsing—studies have found that anywhere from 20 percent to 60 percent do.
That was the reasoning behind Christy's methadone program when she was pregnant with Shelby, although she didn't like it. When she was pregnant with Ryleigh, she started taking buprenorphine, which she was lucky to be able to get on quickly. Experts generally agree that not enough doctors in America prescribe buprenorphine, which requires them to get a registration number with the Drug Enforcement Administration. One study found that as of mid-2012, most U.S. counties didn't have a single doctor authorized to prescribe buprenorphine. Meanwhile, methadone—which can be used to treat withdrawal and cravings, the way buprenorphine does—can only be legally prescribed within specialized, certified programs.
In addition, there's the worrying regional trend of weaning pregnant women off of opioids entirely. Some programs around Lexington, do just that, Critchfield, one of PATHways' founders, says. So-called drug "tapering" is also common around Nashville, Patrick notes. Holmes, the pediatrician, hasn't heard of it around Dartmouth, however, and reacts with horror at the mention of it. "I'm not sure why people are trying that," she says. When I ask if such tapering has been studied, she replies, "I actually think you would have a hard time getting an institutional review board to even approve your study."
Maintenance medications are controversial because some folks see them as "replacing one addiction for another" and because some people prescribed them turn around and sell them on the black market. But top medical societies have long recommended maintenance for pregnant women, for all of the reasons above. "When pregnant women are on maintenance medications, that's what they're supposed to be doing," Holmes says.
The abstinence-only mentality can be hard to get over. Before she became pregnant with Ryleigh, Christy went to a rehab whose view was, "If you're taking medicine, you're not clean." "I struggled with that," she says. But PATHways taught her that taking buprenorphine is no different from needing, say, a thyroid medication, or the medicine she takes for her bipolar disorder every morning. A combination of therapy and maintenance drugs is considered the gold standard for treating opioid addictions.
Once PATHways members give birth, the program takes another science-backed, but unfortunately uncommon, approach. Traditionally, babies born to drug-dependent moms are whisked away for observation for any withdrawal symptoms. But that can actually make things worse. Babies with neonatal abstinence syndrome are sensitive to light and noise; neonatal intensive care units, where they often go, are constantly well-lit and full of beeping monitors. The University of Kentucky tries to keep babies in their moms' rooms as much as possible, with regular visits from doctors and nurses. Sometimes this even means keeping babies with mothers who are set to lose custody. The idea is that breastfeeding and cuddling help babies get through their withdrawal. Ninety-seven percent of PATHways babies that stay in rooms with their mom don't need any treatment for withdrawal, Critchfield says. Other programs have found that keeping babies and opioid-dependent moms together shortens babies' hospital stays and helps the babies require less morphine for their symptoms, suggesting their withdrawal is less severe.
"I was there, but I really wasn't in my mind. I wasn't completely there."
Christy didn't end up giving birth at UK HealthCare. Her labor happened too fast, so she went to the closer Georgetown Community Hospital, where the woman checking her in said, "Oh, my God, I can feel your baby's head." Georgetown doesn't have a comprehensive program like UK HealthCare and, Christy thought, staff there weren't well educated about the maintenance therapy she was on. "That was really shitty for me, at first." Still, hospital staff let Ryleigh stay in Christy's room.
And just as birth is only the beginning of a long journey for typical parents, so it is with parents seeking treatment for substance use disorders. The PATHways staff wants to see their moms for two years after they've given birth. The founders decided they needed that time after the first iteration of the program, which was funded by a federal grant that covered counseling sessions for 10 weeks after participants gave birth. "Almost all" of the mothers relapsed once those weeks were up, Ashford says.
"At that point, they significantly need more support," she says. "They're more stressed, they're more tired. When you're pregnant, there's a lot more programs available for you. After you deliver, a lot of the federal or community-based programs don't prioritize you."
No one I consulted with knew for sure how much a comprehensive program costs per mom-baby pair. It's sure to be a lot because they last so long and involve so many experts. Many argued, however, that it's worth the time and effort. To have just one infant stay in the neonatal intensive care unit costs tens of thousands of dollars. "If we're helping hundreds of babies, I have no doubt we're saving money," Ashford says.
When I asked Patrick how much Vanderbilt's program costs, he said: "I don't know. I don't know that we even look, to be honest."
"I can tell you how much we spend on neonatal abstinence syndrome," he went on. "In 2012, the total hospital bill for neonatal abstinence syndrome, nationwide, was $1.5 billion. About $1.2 billion of that was charged to state Medicaid programs. That's just managing infants with drug withdrawal after birth." In addition to making women's and children's lives better, it might just be fiscally smarter to spend some of that money on comprehensive programs, which seem to help make withdrawal easier for babies and often prevent mom from needing the similar services again, in the future.
It's too soon to say how well PATHways moms fare in the long term. Studies of similarly involved programs, dating from the crack cocaine era, have found that, several months after they graduate, moms are more likely to not use drugs, to hold down jobs, and to have better parenting skills.
Although Christy has only been with PATHways for about one year, she's already counting the blessings the program has brought to her. She just got a job at Panera Bread, her first in over a year. When Ryleigh was born, friends and family came to see her. "For a very long time, nobody wanted me around," she says. "I wasn't invited to anything that they had: Christmases, birthdays." Last year, she hosted her family for Thanksgiving.
Shelby is doing all right too. She's now in gifted classes, but she has behavioral problems, which Christy attributes to her drug use while pregnant. It's hard to know if that's true; studies of what happens in the long run to children born with neonatal abstinence syndrome are scant because it's difficult to isolate the effects of individual drugs versus poverty, instability, or even other drugs the mother took during pregnancy. (Many stereotypes about the young victims of America's last big drug epidemic—cocaine—have since been debunked.)
Christy is still working on some things. She's going through Alcoholics Anonymous' 12 steps, which she's familiar with from her previous treatments, and for which PATHways has support groups. She's on Step Four, writing down the resentments in her life. At one point, she listed for me—proudly—the lavish gifts she'd bought Shelby for her last birthday, including two books full of rare Pokémon cards that she and her fiancé bid for on eBay. Later, she said she shopped compulsively: "Before, it was spending money on drugs, and now I'll go to the store and buy the baby a bunch of stuff that she doesn't even need."
She says she sees PATHways as a "second chance to be a good mother to both my children." She didn't get to raise Shelby, she says. Distressed, I tried to comfort her: Shelby's only eight. You have so much time left. You haven't exactly missed her childhood. Christy pointed out she'd missed Shelby's first steps, her first words: "I was there, but I really wasn't in my mind. I wasn't completely there."
"With the program, I'm able to be a mother, which I wasn't able to be for a long, long time."