An increasing number of pregnant women are in treatment for opioid addiction. They face a heart-wrenching dilemma: stop taking the medication that’s helped them stay sober, or risk a baby born in withdrawal.
Now, researchers want to know if they can predict how severe that withdrawal will be, and whether they can head symptoms off before they get worse. And they're recruiting mothers like Ashley to help them answer those questions.
“I was prescribed Percocet. So that's how it started."One mother hopes to help researchers figure out how best to treat babies born dependent on opioids.
Ashely is talking about how her addiction to opioids began, how it led her to heroin, and how she came out the other side. (We're not using Ashley's last name to protect her privacy.)
“What finally ended my battle was finding out that I was pregnant. I was clean at the time I found out I was pregnant but in the past I had relapsed so many times that I never usually made it past three or four months. But this time it was different," says Ashley.
Today, her healthy six-month-old Jackson is sucking back a bottle in his bouncy seat.
“Say hello!" She coos to her baby. "This is definitely my reason to stay on the path of recovery. once I did find out I was pregnant it was so easy not to relapse."
Ashley says taking methadone also helped her stay sober. The medication keeps a low level of opioids in her system so she won’t crave heroin, but it doesn’t get her high. Like so many other addicts in recovery, Ashley credits methadone with saving her life. But when she found out she was pregnant, she worried it would harm the baby. Doctors said: keep taking it.
“In the beginning it was tough because I was like, ‘Oh, OK, I'm going to get off methadone.’ And they were like, ‘well you can't. Not only can you lose the baby. But you're going to be in such a vulnerable emotional state you really need something to help with the cravings,'" says Ashley.
Doctors also told Ashley her son would likely go into withdrawal once he was born. And she agreed to participate in a study they were launching to find out which medications work best for babies like hers. As Ashley comforts her son in her Pawtucket apartment, she remembers how hard it was to watch his symptoms develop. Doctors couldn’t give him medication until he was in bad shape.
“He was shaking and sneezing over and over. He was really flush. His cheeks were really red. He had a temperature, runny nose," she remembers. "You could tell he was just so miserable."
What if doctors could have started treating Jackson for withdrawal sooner, before his symptoms got so severe? That’s one question a new study – the first of its kind -- is trying to answer. Dr. Jonathan Davis is chief of newborn medicine at Tufts Medical Center in Massachusetts.
“We know that about 60 to 80 percent of the babies will withdraw, but we have no idea who they're going to be," says Davis. "But we don't treat them until the withdrawal is well underway. If we could predict up front in the mothers.... and then what we could do if the babies were low risk, we'd send them home at day two like we do with other normal babies. Then if they were high risk, why wait 'til they withdraw?"
Davis thinks he can develop such a prediction tool, simply by swabbing the mother’s cheek for a DNA sample.
“We did find an association with a small genetic change in the mother, the same one we found in the baby," he says, "that seemed to predict longer or worse outcomes and the need for longer or more treatment, etcetera."
Davis’ study will also try to answer questions about which medication works better: methadone, the same drug Ashley takes to curb her cravings for heroin, or morphine, another opioid used to treat pain. And they want to know, is one better in the short term, but worse in the long term? They’re recruiting nearly 200 babies, some of whom will get morphine, others methadone. Then they’ll follow up at 6 months and 18 months to see how they’re doing.
“And you can imagine how complicated it is to sort out some of these long term follow up issues," Davis says. "Is it the effect of the drugs the mother took in utero? Is it other environmental factors for the mother during her pregnancy?”
Davis’ colleague, Women and Infants pediatric psychiatrist Dr. Barry Lester, says answering those questions is urgent. In the past few years, the number of babies born in drug withdrawal, or neonatal abstinence syndrome, has more than quadrupled. That number is even higher in Rhode Island. The average cost of their stay in the hospital is more than $50,000. But doctors can’t agree on the best way to treat them. Lester says the few research studies that have been done are already dated.
“All but three or four of them were done before 2000. And they go back to the 80sm" says Lester." That’s extraordinary when you go back to when we were so concerned about cocaine or methamphetamines. Hundreds and hundreds of studies," says Lester, who was involved in some of those studies.
Lester says we know a lot about the long term outcomes for babies exposed to cocaine or meth. All we know about opioid exposed babies is that their withdrawal symptoms are heartbreaking.
“Out of the thousands and thousands of babies I’ve seen over my career, these are probably the most difficult," he says. "These are worse than cocaine-exposed babies or methamphetamine because they scream. And they’re very, very hard to soothe.”
Recovering addict and mother Ashley knows first-hand how hard it is to settle a baby like that. She found the medication helped. But it took more than that: her son Jackson needed tight swaddling and a dimly lit, quiet environment. Now, he’s plump and pink. The suffering is behind him. Still, Ashley can’t forget what he went through because she stayed on methadone.
“It’s your fault that your poor little baby is going to go through such a hard thing," she says. "They’re so new to the world, they don’t understand anything. They don’t realize that life isn’t like that. That pain and sickness, that’s not what life is all about. But at the same time in order to be sober, I needed it. So damned if I do, damned if I don’t."
She’s hopeful Jackson’s distress was temporary, and that he’s going to develop into a smart, healthy little boy. And she hopes being part of the neonatal abstinence syndrome study will help other little boys avoid the worst of it.