Ashley’s path to addiction followed that of so many countless thousands snared by the nation’s opioid epidemic. It started legitimately enough, with liquid Percocet that was prescribed to her after throat surgery. And – faster than she knew was possible – she escalated to street drugs and heroin.
For a while, her secret was her own, well-hidden from her extended family and 5-year-old daughter. But eventually an ultrasound confirmed her nagging suspicion that she was pregnant. “I really started crying hard,” she said, when a nurse midwife and student nurse gave her the news that she was about 15 weeks along. “I told them I needed help. I knew if I continued to use that I wouldn’t have custody of my child.”
For Ashley, who asked that her last name not be used, the idea of losing custody was more painful than the withdrawals she had been desperately seeking to avoid. “I knew I had to get it done,” she said. “I didn’t want to lose my son, and the daughter I already had. I already knew too many people involved with drugs who continued to use during their whole pregnancy – and ended up getting their kids taken.”
Pregnant women are not somehow magically shielded from addiction or less susceptible to its depredation. But they pose unique health challenges, face uniquely painful consequences, and are subject to especially harsh judgment and vilification, advocates and health-care providers say.
What they think and say about themselves “is worse than anything anyone can say to them,” said Amy Langenfeld, a certified nurse midwife for Minneapolis Indian Health Board, whose patient base is disproportionately hard-hit by opioids. “These women are just ravaged with shame and embarrassment.”
Their paths to recovery and ability to carry their pregnancies to term depend on careful, evidence-based approaches that may include medicated assisted treatment during pregnancy with methadone or buprenorphine – the opposite of what popular opinion might consider to be “good for the baby.”
No matter what the circumstances, care providers need to seize the moment when opioid or other illicit drug exposure is discovered, said Dr. Virginia Lupo, M.D., chair of the Department of Obstetrics and Gynecology at Hennepin County Medical Center. “Losing a house, losing a car is one thing. But losing a baby in your arms is going to be, hopefully, one of the biggest potential motivators [for getting help]. And I think people should try to exploit that in a very positive way.”
Neonatal abstinence syndrome
The U.S. opioid epidemic (driven by prescription painkillers and heroin) is well documented. It accounted for more than 16,600 accidental overdose deaths in 2010 — a number that has quadrupled in the past 20 years.
As the epidemic continues apace, health officials are noting how it is manifesting among pregnant women and neonates. Many studies report a sharp rise in the incidence of neonatal abstinence syndrome (NAS) and associated health-care costs.
This table shows NAS diagnoses rising in Minnesota:
Prevalence of Neonatal Abstinence Syndrome (NAS)
| Calendar year | Number of infants with NAS diagnosis | Number of infants born during calendar year | Infants with NAS diagnosis per 1,000 births |
|---|---|---|---|
| 2012 | 162 | 28,593 | 5.7 |
| 2011 | 139 | 28,392 | 4.9 |
| 2010 | 128 | 29,042 | 4.4 |
| 2009 | 84 | 29,065 | 2.9 |
| 2008 | 69 | 28,770 | 2.4 |
Data are limited to the final version of Minnesota Health Care Programs (MHCP) paid claims available to the MN Department of Human Services as of July 30, 2013. Diagnosis of NAS must be on an inpatient hospital claim with a beginning or ending service date during the calendar year. A count of unique recipient-delivery date combinations based on maternal delivery claims was multiplied by 1.0183 (rate of multiple gestations) to determine a proxy for the number of infants born during each CY.
Neonates exposed to opioids in utero have neurologic symptoms including tremors, irritability and high-pitched crying. They are more likely to have respiratory complications and feeding difficulties, and require longer hospital stays. The severity of symptoms varies widely, and the treatment includes everything from anti-seizure medications to swaddling and rocking.
The studies show, among other things:
- In 2011-2012, 5.9 percent of pregnant women ages 15 to 44 in the U.S. said they were using illicit drugs, slightly up from 4.4 percent in 2009-2010.
- Between 2000 and 2009, the number of NAS hospital births nearly tripled nationally, from 1.20 per 1,000 births to 3.39 per 1,000 births (about 4 million).
- Hospital charges for NAS births increased from $39,400 in 2000 to $53,400 in 2009 – 77.6 percent of which was attributed to state Medicaid programs.
- New Hampshire reported a rise in NAS births, from 1.5 per 1,000 births in 2000 to 8.8 in 2009.
- Florida reported a similar rise, from 2.31 per 1,000 births in 2007 to 7.52 in 2011.
- Washington State reported an increase to 3.3 per 1,000 births in 2008.
- Ohio reported $70 million in NAS health-care expenses in 2011.
- In Minnesota, according to the Department of Health and Human Services, the number of NAS infants born to participants in state health-care programs increased from 2.4 per 1,000 births in 2008 to 5.7 per 1,000 births in 2012 (about 26,000).
The numbers have generated dozens of news stories with such headlines as “More pill-using-mothers delivering addicted babies,” and “Tiniest victims of Ohio’s painkiller epidemic.”
The tone of the coverage prompted 40 doctors and researchers to craft an open letter asking news outlets to cease and desist.
“Addiction is a technical term that refers to compulsive behavior that continues in spite of adverse consequences,” the letter-writers said. “In fact, babies cannot be born ‘addicted’ to anything regardless of drug test results or indicia of physical dependence. Evidence of physiologic dependence on (not addiction to) opiates has been given the name neonatal abstinence syndrome (NAS), a condition that is diagnosable and treatable.”
Awash in shame and fear
All semantics and statistics aside, Ashley was scared. She wept to think of her baby in distress, was weighted in shame and paralyzed with fear of losing not only her newborn but also her young daughter. In her stressed-out Minneapolis neighborhood, she had seen it happen to more than one woman.
Ashley, a single mom, had some things going for her: a job, stable housing (a rarity), and supportive extended family members (including a sympathetic aunt). She also had an understanding and savvy doctor.
Two important things happened next: Ashley was immediately referred to Project Child, a Hennepin County program that supports addicted women through their pregnancies and beyond (with everything from basic needs to parenting skills). And she was immediately referred to an addiction treatment and methadone maintenance program.
As counterintuitive as it might seem, going cold turkey could be a tragic mistake, Langenfeld said. She explained that the greatest risk to opioid-addicted pregnant women is sudden withdrawal, which can deprive a fetus of oxygen and cause death. Continuing street drugs is almost as dangerous, she said, because of inconsistencies in availability and content, not to mention such attendant hazards as “prostituting yourself to get the drug.” Even mini-withdrawals can cause fetal stress, she said, noting that street drugs have a half-life of three to four hours, compared with 27 hours for methadone. In addition, she said, someone in a methadone maintenance program “is being seen by a caring professional six days a week.”
Labor, delivery and beyond
There can also be complications and special considerations during labor and delivery, Lupo said. Babies born sleepy, for example, should not be given Narcan, which would cause “immediate and florid withdrawal.”
And doctors unwilling to administer painkillers to women on methadone during delivery should get over it, she said. “Sometimes caregivers say, ‘No, I don’t want to give more drugs to that person who’s a drug abuser anyway.’ And that’s totally the wrong way to look at it,” Lupo said. “These women are used to having their opiate receptors saturated by the methadone, and they’re going to require a lot more pain meds than someone who’s never had a narcotic tablet in their life. It’s not supporting an addiction when somebody has just had a C-section and is in pain from the incision. That’s a nuance of taking care of moms that you’ve got to appreciate and accept and deal with.”
Lupo, who has worked in the field for 30 years and helped craft the state’s substance-abuse and pregnancy reporting laws in the late 1980s, brings a mix of tough love, pragmatism and compassion to the dilemma of pregnancy and addiction.
“This is not a game of gotcha. … That’s not what we’re here for,” she said. “We want to figure out what services we can get you and assess whether it’s safe for your kid to go home. If you’re using so much you cannot care for a child, we’re not helping you or the baby by making you take this baby home.”
‘What we offer is hope’
That’s where Project Child comes in, says Tom Turner, who supervises the 13-year-old assessment, referral and case management program in Hennepin County. The program helps its clients get their basic needs met (clothing, housing, food, furniture), and provides information and referrals to support good nutrition, medical care, addiction treatment, and parenting skills. The program, which keeps clients for about six months, also manages communications with state and county child protection workers.
There are intangibles, as well.
“What we offer a lot of times is hope for people,” Turner said. “Some of these women have lost children before and were devastated by it and have a lot of grief and loss and trauma around that. It’s really great when you can see someone get through that and keep her child.”
He’s proud of the outcomes, he said: Project Child served 124 women in the first nine months of 2013. Of those, all but one or two gave birth “free of chemicals,” found stable housing, completed long-term support programs, and maintained custody of their children.
‘He smiles so big’
Ashley is still on methadone, and, though her long-term goal is abstinence, she acknowledges the precariousness of her situation. “It’s still stressful,” she said. “I know when I get mad, it does run through my head that I want to go use.”
But she’s as determined as ever: “I never want to lose my kids, no matter how much they stress me out or upset me,” she said. “I would never want someone else taking care of my kids.”
Trust and kindness flow between Ashley and her caseworker, Cindy Fleming, who offers frequent affirmations while taking a turn at holding the baby. “Ashley was self-motivated. She didn’t need a lot of guidance, but I was there for her.”
Even as he steals her sleep, the baby brings Ashley joy: “I enjoy watching him smile,” she said. “He smiles so big, it looks like he’s going to laugh.”
Rita Kovtun, a Higher Education Consortium for Urban Affairs student intern, contributed to this report.
