LINDA WERTHEIMER, HOST:
There's been a sharp rise in the number of babies born to mothers on opioids. It's a painful way to enter the world, cut off from the drug in their mother's system. Most newborns go into withdrawal.
Over the next two days, NPR is looking at how these babies are affecting society - the ripple effects from baby to hospital, mother to community. Rhode Island Public Radio's Kristin Espeland Gourlay starts us off with the babies, what we know about treating those born dependent on opioids.
KRISTIN ESPELAND GOURLAY, BYLINE: Lexi is 2 weeks old, just 6 pink pounds in all that swaddling. She's been at Women and Infants Hospital in Rhode Island since she was born, withdrawing from the methadone her mother took while she was pregnant. Now, doctors are weaning her off.
UNIDENTIFIED WOMAN: Hi, Peanut. How's she doing? Do you have any concerns?
GOURLAY: A doctor comes to check on Lexi and her mother, Carrie. We're not using their last names to protect their privacy.
CARRIE: A little bit of concern yesterday. I think the coming down was kind of catching up with her.
UNIDENTIFIED WOMAN: Do you feel like she's jittery or -
CARRIE: She would not - did not want to be put down last night. Like, the shakes a little bit were -
GOURLAY: Lexi has Neonatal Abstinence Syndrome, or NAS. As rates of opioid addiction climb, the number of NAS babies increased five-fold from 2000 to 2012. Lexi's getting better - most babies do - but she's had tremors, diarrhea. She's cried and cried. Her little arms and legs clench. She's been feverish, her mother says.
CARRIE: I know what she's feeling, and that's, like - that, I think, is the worst part.
GOURLAY: Carrie was addicted to heroin, and she knows withdrawal is miserable. Carrie says she's been off heroin since she found out she was pregnant, taking a medication called methadone. It keeps a low level of opioids in her system so she doesn't go into withdrawal, but it doesn't get her high. And for Carrie and thousands like her, it's a lifesaver. But getting pregnant poses a dilemma. Stop and risk relapse or miscarriage, or know the baby has a 60 to 80 percent chance of developing NAS?
CARRIE: It's hard to watch, obviously, as her mother 'cause, like, you're helpless and there's really nothing you can do. It's kind of like you are a lot of the reason why she's going through what she's going through.
GOURLAY: They stay weeks, even months in hospital nurseries across the country like this one.
CINDY ROBIN: We are heading into the nursery.
GOURLAY: This is nurse Cindy Robin. She's been caring for mothers and newborns for more than 30 years.
ROBIN: That is the sound of one of our babies who is withdrawing. Their cry is very different. It's a more distressed cry, and it really pulls at your heartstrings to have to listen to them.
GOURLAY: Robin says babies with mild NAS symptoms sneeze and sniffle. They have trouble settling down. Babies with more severe cases can have seizures and dangerously high fevers. Robin says nurses have to swaddle them tightly and dim the lights.
ROBIN: They really just need to be held in a nice quiet spot. We have nice quiet music playing, and we usually will dim the lights.
GOURLAY: Nurses with special training check on the babies every couple of hours because their symptoms can get worse or multiply.
ROBIN: So these are the things that we look for, and this is what we teach the parents - is their baby crying excessively? Is it a high-pitched cry? Is it just a continuous cry? How do they sleep after they eat?
GOURLAY: Medication also helps ease this constellation of symptoms - then doctors wean them off - but no one actually knows which drug works best. Dr. Jonathan Davis is chief of newborn medicine at Tufts Medical Center.
JONATHAN DAVIS: The American Academy of Pediatrics and others recommends an opioid for the babies 'cause you're giving them back what they're withdrawing from, and so morphine and methadone are the two most common.
GOURLAY: But it's all trial and error. Davis says no one's really done the research, and morphine and methadone aren't even approved specifically for use in newborns by the Food and Drug Administration.
DAVIS: As I spoke to people around the country, everyone would have their own approach and a very different way of treating these babies. And we thought that quite odd.
GOURLAY: So Davis and his colleague, Dr. Barry Lester, have launched a major study to sort this out. They're hoping to enroll 180 babies. It's a double-blind, randomized, controlled trial, which means no one knows which newborns get methadone and which get morphine. And they're taking it further. No study yet has looked at the long-term effect of the drugs, so Davis and Lester will follow up with babies until they're 18 months old.
DAVIS: It may be that one agent is safer short-term, but when we look longer-term it may actually be more dangerous.
GOURLAY: Lester with Women and Infants Hospital in Rhode Island says it'll be tough to tease out those long-term effects because so many other factors influence a baby's development.
BARRY LESTER: So if you're drug-exposed and you're growing up in an inadequate environment - which, you know, may not be poverty, it may be inadequate parenting - that's a double whammy. I mean, those are going to be your worst-case scenario, so to speak.
GOURLAY: When it comes to treating babies for the long term, there are still so many unknowns. But Lester says we do know these medications help most babies get through withdrawal in about six to eight weeks.
Nurse Cindy Robin has watched many of those little journeys, and they move her.
ROBIN: It's heartbreaking sometimes to see these babies suffer. It can be heartbreaking, but in the end it is also rewarding because you see them get better and you see them go home.
GOURLAY: For NPR News, I'm Kristen Espeland Gourlay.
WERTHEIMER: This story is part of a reporting partnership with NPR, NPR member stations and Kaiser Health News. Listen this evening to All Things Considered for how these babies have changed the culture of a Connecticut hospital.
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