Amanda Williammee pauses at the toddler classroom window to watch 2-year-old daughter Taycee.

“I like to peek in on her and see what she’s doing before she sees me,” Williammee nearly whispers. “I love watching her, it’s too funny.”

There’s a dance party in progress and then Taycee spots her mom, screams and comes running to the door.

“Did you dance?” Williammee says, leaning down to her daughter.

It seems a typical preschool pickup, but it’s not. The University of North Carolina Horizons Program is a residential center where mothers can bring their children. The kids attend school or day care while mothers take classes and go to therapy sessions.

Williammee, 25, has struggled with addiction since she was a 19-year-old college student. She injected opioids during both of her pregnancies, and her babies were born with neonatal abstinence syndrome, which includes withdrawal symptoms like tremors, irritability, sleep problems and high-pitched crying. She remembers that withdrawals were harder for toddler Taycee than they’ve been for 6-month-old Jayde.

“It wasn’t just like we had this two-week period at the hospital of her being sick. Like, it went on for months because she did not sleep,” Williammee said, recalling that Taycee would sleep only for 20-minute stretches and needed constant swaddling. Sometimes, Williammee ran a warm bath for the baby to calm her.

“She’d wake up and just be miserable,” Williammee said.

On average, a baby is born every 15 minutes in the U.S. withdrawing from opioids, That staggering statistic raises concerns among doctors, social workers and mothers like Williammee who worry about how drug abuse while pregnant affects a baby’s health.

Today, both Taycee and Jayde are developing normally. Still, Williammee wonders, how did the drugs affect their tiny bodies and brains?

Research is just beginning to point toward the answers. A recent tracked nearly 100 children and their mothers, who were in medically assisted treatment during their pregnancy, for 36 months. Hendrée Jones is executive director at UNC Horizons and co-authored the study. She offered reasons to be optimistic.

“The children through time tended to score within the normal range of the tests that we had,” Jones said.

Dr. Stephanie Merhar, a neonatologist at Cincinnati Children’s Hospital, released a separate study after growing increasingly worried the past few years as she treated children coming in for checkups. Her team of 87 infants who had been diagnosed with neonatal abstinence syndrome at birth. Each child had been given a standard test for 2-year-olds that evaluated cognitive, language and motor skills — the same assessment used in Jones’ study.

What Merhar found was a call to action, she said.

“Most of these children do well and they do within the normal range,” Merhar said. “But it’s important to know that there is a risk for some delays and that these children are monitored closely.”

Still, exposure to opioids in utero does not appear to be as damaging as some other addictive substances. “It’s not like the fetal alcohol syndrome problem, where it really affects the brain,” Merhar said. “[Children with fetal alcohol syndrome] are at high risk of mental retardation and there’s significant developmental delays.”

Merhar’s analysis found that about 8 percent of the children had been treated for strabismus, or lazy eye, by age 3. A number of the children that Merhar studied also scored at least one standard deviation below the mean in cognitive, language and motor abilities.

The reason for those delays is unclear, though. Even more, the long-term outlook for the children is unknown, Merhar said.

National experts like Dr. Jonathan Davis, who chaired a Neonatal Advisory Committee for the Food and Drug Administration, said the current research is reassuring but the essential long-term research isn’t being done yet.

Davis, who is also chief of newborn medicine at Floating Hospital for Children at Tufts Medical Center, has passionately advocated for a national registry for babies exposed to drugs while in the womb. While current research doesn’t reveal any major motor, language, or cognitive delays, he said, it cannot answer questions like “How are these children going to function when they get to school? How are these children going to speak, socialize and interact?”

Researchers are quick to point out that fear spread nationwide about the children of the crack cocaine epidemic of the 1980s and early ’90s. Dire predictions of developmental delays turned out to be grossly exaggerated, according to the .

Dr. Lauren Jansson, director of pediatrics at the Center for Addiction and Pregnancy at Johns Hopkins Medicine, has treated mothers and babies since the early 1990s. When asked about how the babies will develop, she said, “The one solid thing we can say about children who are exposed to substances prenatally is that their mothers need treatment.”

The children, she said, are more likely to have optimal development if the mothers receive treatment.

UNC Horizons opened its program in 1993 because of the cocaine epidemic. Since then, Jones said, it has become clear that the lives of people with substance use disorders — whether involving cocaine or opioids — can be very chaotic, and that can affect children, too.

“It’s incredibly difficult to make a simple linear cause and effect between there was a prenatal exposure to opiates and therefore, because of that exposure to opiates … we see this particular poor birth outcome,” Jones said.

Most of the mothers at UNC Horizons took multiple substances when pregnant and also experienced trauma, abuse or neglect in their own childhoods. And, Jones said, that can be hard to overcome.

“There’s oftentimes an unrealistic expectation by society. They’re supposed to automatically know how to quote, unquote … be good mothers, how to be nurturing mothers,” Jones said. “That’s like trying to teach somebody algebra when they’ve never even had addition.”

That’s why UNC Horizons pairs parenting classes with addiction treatment.

The mothers enrolled in UNC Horizons often spend months in the residential program. They live in apartments that have intercoms connected to an office staffed 24 hours a day. Trained staff members administer their medication-assisted treatment, drive them to and from the treatment facility each day and are on hand to answer questions or respond to crises.

During a recent Tuesday morning group therapy session, about a dozen mothers sat in a circle of comfortable chairs with ottomans in front of them. Two newborns snuggled on their moms’ chests as Jones talked about gratitude. She asked each of them to name something for which they were grateful.

One mother simply shook her head and said she was thankful for being able to remember things she does with her kid: “I’m grateful to remember, to feel,” she said to the group. Others said they are grateful not to be sleeping in a car, or consumed with searching for their next fix.

Williammee, who began treatment for the third time in February, was quiet.

A few days later, during an interview at her homey, staff-monitored apartment, she described why this time will be different.

“It’s going to work. It is,” she said. “’Cause I’ve got a lot of tools to take with me and use in my life to stay clean, instead of using drugs to cover up my feelings when something’s hard.”

And, this time, child protective services has threatened to take Taycee and Jayde, who were napping in the next room as Willammee spoke.

“I’m not just some drug addict,” she said. “I’m a mother of two kids, and I feel like I’m a great mother. I have educational goals I plan to accomplish, and I plan on being a productive human being in our society.”

Williammee said she hopes to finish her last year and half of college and become a teacher.

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Many states — including some that have been hardest hit by the opioid crisis — don’t know how many of their youngest residents each year are born physically dependent on those drugs.

Pennsylvania is one of those states. , head of Pennsylvania’s Department of Human Services, calls the information he’s working with “reasonably good.”

“Data is never pristine when you’re dealing with 2.7 million people,” he said. “Do I think it gives you a good picture of the issues that are out there? Yes.”

Between 2013 and 2014, about 3,700 babies on Medicaid in Pennsylvania were born with neonatal abstinence syndrome, Dallas said. The statistics show that 31 died before their first birthday — and neonatal abstinence syndrome likely played a role in at least some of those deaths.

But it’s not all the data Dallas would like to have. The statistics are two years old, he said, and only deal with babies who are covered by Medicaid, the government’s health insurance for the poor and disabled. That’s just a slice of Pennsylvania’s nearly 13 million people. More comprehensive, statewide numbers, he said, would have to come from Pennsylvania’s Department of Health — and that agency isn’t keeping track.

Cuddling or rocking the babies nearly nonstop is key to successful treatment, Wolf said, along with adjusting medication doses frequently in the first 48 hours of the child’s life, to wean these newborns off opioids with as little discomfort as possible.

Each infant’s stay in the hospital can stretch past two or three weeks, and can cost $10,000 or much more. Then the babies need follow-up visits.

Pediatricians say that if the right agencies get real-time information, the babies are , and it’s more likely that hidden roots of the epidemic can be identified and addressed.

To make good decisions, health officials need basic information: Which infants are affected? How many, where, and why?

Pennsylvania might look to Tennessee’s tracking efforts. Tennessee reacted quickly when doctors started seeing a lot more cases of neonatal abstinence syndrome in 2012, recalled , a pediatrician and public health specialist with the Tennessee’s Department of Health.

“We were hearing from hospitals across the state, that they were really, really full,” Warren said, “and in some cases, bursting at the seams.”

It’s now mandatory for doctors and hospitals to report cases of neonatal abstinence syndrome within 30 days, and Tennessee made it simple for them to do so.

“If you’ve ordered from Amazon or an online service and you’ve been able to do that, you can navigate this system with ease,” Warren said. “And truly, at the end of it, you click ‘submit’ and that case is reported to us at the Department of Health.”

The data that started rolling into Tennessee shattered a number of stereotypes, Warren found.

“I think sometimes there’s a tendency to say these are just those moms who are using illicit drugs or buying those drugs on the street,” he said. “But what the surveillance system has actually allowed us to see, is that, in the majority of our cases, Mom is getting at least one substance that is prescribed to her by a health care provider.”

As a result, the state alerted doctors to the issue, recommending they try to change their prescribing habits, and more often offer alternatives to opioids, especially to pregnant patients. The evidence-based shift in prescribing recommendations only came about because health officials had solid data they could share.

When a public health crisis emerges, real-time data are especially important. Policymakers can use the information just as Tennessee did — to tailor solutions to the root causes. Otherwise solutions may miss the mark, or, if the data are old, come after the problem has festered and grown.

Pennsylvania Department of Human Services Secretary Ted Dallas acknowledged his state is missing out.

“If we had better data, generally, my theory would be we could make better decisions,” he said.

Just as I was wrapping up this story, Pennsylvania’s health department called. Starting in July, officials there plan to start collecting data about all babies who are born dependent on opioids.

The system to collect the information is still being developed, but neonatal abstinence syndrome will be added to the Pennsylvania’s list of , meaning that every time doctors diagnose a baby with the condition, they’ll be required to the state.

This story is the fourth in our four-part series, “Treating the Tiniest Opioid Patients,” a collaboration produced by Kaiser Health News, NPR and local NPR member stations.

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Hensley says she preferred drugs like Percocet and morphine, but opted for heroin when short on cash.

By the time she discovered she was pregnant last year, she couldn’t quit.

“It was just one thing after another, you know — I was sick with morning sickness or sick from using,” said Hensley, who is 25 and lives in Cleveland. “Either I was puking from morning sickness or I was puking from being high. That’s kind of how I was able to hide it for a while.”

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Rossi works in the neonatal intensive care unit (NICU) at the Hospital of Central Connecticut near Hartford. Like many hospitals across the country, it has seen the number of babies born with go up dramatically in recent years. The National Institute of Drug Abuse reports more than in the U.S. were born in withdrawal from opioids in 2012, the most recent year for which data are available. The hospital says each baby costs roughly $50,000 to treat.

These fragile and fitful babies present new challenges for hospitals. There’s research that suggests they may do best when they can be held for hours, by their mothers, in a quiet, private room as they go through the process of being weaned off the drugs. But delivering that care means changing hospital systems and attitudes about addiction among doctors and nurses.

“It was a lot about taking babies away from moms,” Rossi said, describing the way she first learned to care for babies in withdrawal. The nurses saw their role, she said, as “trying to protect the baby from the mother, basically. Like we were going to cure the baby but not cure the mother and the family.”

It wasn’t the best strategy. The babies can often be soothed best by their mothers. But mothers are struggling, too.

This story is the second in our four-part series, “Treating the Tiniest Opioid Patients,” a collaboration produced by Kaiser Health News, NPR and local NPR member stations.

ºÚÁϳԹÏÍø News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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As rates of opioid addiction have climbed in the U.S., the number of babies born with  has increased, too — from 2000 to 2012, according to the National Institute of Drug Abuse.

It can be a painful way to enter the world, abruptly cut off from the drug in the mother’s system. The baby is usually born with some level of circulating opioids. As drug levels decline in the first 72 hours, various withdrawal symptoms may appear — such as trembling, vomiting, diarrhea or seizures.

At some point, if symptoms mount in number or severity, doctors will begin giving medication to help ease them. The idea is to give the the baby just enough opioid to reduce their symptoms, and then then slowly, over days or weeks, decrease that dose to zero.

But Davis said no one’s really done the research to determine which drug works better for babies, and doctors are left to figure that out by trial and error, case by case. Though the Food and Drug Administration hasn’t officially approved morphine or methadone for use in newborns, doctors prescribe these drugs to the children anyway, in smaller doses than they give adults.

“As I spoke to people around the country, everyone would have their own approach and a very different way of treating these babies,” Davis said. “And we thought that quite odd.”

So he and a colleague, Brown University developmental psychologist , have launched a major study to sort out what works best. The two are hoping to enroll 180 babies in their double-blind, randomized, controlled trial — no one will know which newborns are getting methadone, and which are getting morphine, for example, until the study’s end. And they’re taking the research further: No study yet has looked at the long-term effects of the drugs, so Davis and Lester will continue to follow-up with measures of cognitive and physical development until the children are 18 months old.

“It may be,” Davis says, “that one agent is safer short-term, but when we look longer-term it may actually be more dangerous.” Teasing out long-term effects of a drug isn’t easy, Lester says; many factors can influence a baby’s development.

“If you’re drug-exposed and you’re growing up in an inadequate environment — which may not be poverty, it may be inadequate parenting — that’s a double whammy,” he says. “Those are going to be your worst case scenarios.”

Despite many remaining unknowns, doctors have consistently found that treatment with morphine or methadone enables most babies to get through withdrawal in about six to eight weeks.

“It can be heartbreaking,” said Robin, who has helped shepherd many kids through dark days. “But at the end, it is also rewarding,” she said, “because you see them get better and you see them go home.”

This story is the first in our four-part series, “Treating the Tiniest Opioid Patients,” a collaboration produced by Kaiser Health News, NPR and local NPR member stations.

ºÚÁϳԹÏÍø News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).