First lady Melania Trump is drawing attention to babies who face withdrawal after being exposed to opioids in the womb, even as health facilities are working to develop better ways to care for them and as significant research gaps remain.

Trump traveled to Monroe Carell Jr. Children's Hospital at Vanderbilt in Nashville as part of her Be Best Campaign that launched in May. There she spotlighted the condition, known as neonatal abstinence syndrome, that earlier data show have surged with the opioid crisis.

[Also read: Melania Trump visits Microsoft as part of ‘Be Best’ initiative]



#BeBest will continue to bring attention to NAS. A very big thank you to @VUMCchildren & staff for an informative & moving visit. It is a joy spending time w/ such courageous kids & to witness the strength of families who must deal with these tough situations. pic.twitter.com/WuZtjee1EQ — Melania Trump (@FLOTUS) July 25, 2018

But while public health officials have data on opioid-related death and addiction, they don't know precisely to what extent the drugs impact babies. They can develop neonatal abstinence syndrome from women taking opioids during pregnancy, but not all those women are abusing drugs such as heroin or prescription painkillers. Some are taking medications to treat their addiction, while others were prescribed opioids for pain.

Health experts have said they need better information on treatment. They say standards for screening and working with pregnant women are key, and that they need more data about which parts of the country have been particularly hard hit. Certain hospitals have protocols for care; others do not.

"All of those things are still gaps," said Dr. Stephen Patrick, a neonatologist at Vanderbilt. "One of the things I hope the first lady's visit brings is that we see additional attention to this population so that we get coordinated approaches for how we can improve outcomes for pregnant women and babies."

The most recent government data available on the incidence of neonatal abstinence syndrome is from six years ago. An estimated 21,732 infants were born with the condition in 2012, a five-fold increase from a dozen years earlier.

Some women who seek addiction treatment upon finding out they are pregnant are prescribed methadone or buprenorphine by a doctor because they otherwise risk having an overdose, miscarriage, or premature birth. The medicines help the women manage withdrawal symptoms but carry the risk themselves for neonatal abstinence syndrome.

Doctors have noticed the difficulties infants face. Soon after birth, babies have seizures, cry excessively, have feeding difficulties, sweat, and vomit. An infant with the condition stays in the hospital for more than two weeks or even for months, compared with the typical two-day stay after birth. This can lead to costly medical care.

Though babies are given medication for particularly severe withdrawal, the American Academy of Pediatrics and the American College of Obstetricians and Gynecologists instead recommends other measures, including placing the baby in a dark and quiet room away from the neonatal intensive care unit, swaddling, breastfeeding , and staying in the same room as their moms.

Vanderbilt uses these types of standards, but not all hospitals have policies in place to make sure that infants aren't in the hospital longer than they need to be, and to reduce readmissions once they get discharged. Vanderbilt has come up with a scoring system so that doctors can take different approaches depending on how much a baby was exposed to opioids in the womb.

"We do know that standardizing your approach improves outcomes," said Patrick, who is also on the American Academy of Pediatrics Committee on Substance Use and Prevention. Still, he added more research was needed, including withdrawal's impacts on infants when women have also used alcohol during pregnancy, and on how children are affected as they get older.

A 2015 bill called the Protecting Our Infants Act directed the Department of Health and Human Services to come up with recommendations for treatment of neonatal abstinence syndrome. The recommendations, issued in June 2017, were similar to those by ACOG and AAP, but a 2017 report from the Government Accountability Office recommended that the agency go further.

It said the administration should implement the policies, and that it do so by listing its priorities, setting a timeline, outlining responsibilities by other agencies , and determining how it will gauge success.

“Having such a plan in place is important to ensure priorities are known and responsibilities are clear so that agencies and stakeholders can take appropriate action,” GAO wrote.

Lawmakers are paying attention. Rep. Evan Jenkins, R-W.Va., said in May that he received a commitment from HHS officials that the plans would be carried out.

"One of the best ways we can fight the drug crisis is to share treatment plans, approaches and interventions that are working so they can be implemented nationwide," he said.

HHS said it was still finalizing the implementation and looked forward to continuing work with Congress on the issue.

In the Senate, one proposal to continue moving the effort forward is through the Protecting Moms and Infants Act introduced by Senate Majority Leader Mitch McConnell, R-Ky., and Sen. Bob Casey, D-Pa. The bill, which is meant as a follow up to the Protect our Infants Act, would direct HHS to identify research topics and review medical programs for babies with neonatal abstinence syndrome. It would also direct the agency to develop recommendations for prevention and treatment, and tasks the Centers for Disease Control and Prevention to work with states to improve their responses.

A large legislative package passed by the House in June requires the Centers for Medicare and Medicaid Services to issue guidance on treatment for neonatal abstinence syndrome for infants covered under the Medicaid program, and requires GAO to study ways that pregnant women with substance abuse disorder struggle to access healthcare coverage.

Don Stewart, McConnell's spokesman, said that Senate committee chairmen were working to arrive at an agreement on timing and amendments to bring an opioid bill to the floor soon.

As facilities wait for action from Congress and government agencies, many of them say that the tone has shifted thanks to the White House highlighting the issue. Rebecca Crowder, the executive director of Lily's Place, which Trump visited last year, said that members of the administration reach out regularly and asks how they can help. Lily's Place is in Huntington, W.Va., and offers medical care and other services to families who have babies with neonatal abstinence syndrome.

"Her visit has helped us in many ways," Crowder said. "Not only did it bring attention, and work on destigmatizing what moms and babies are going through, but it made people more interested to find ways to be more helpful [to people with addiction] in the community."