What Happens When Opioid-Exposed Babies Go Home?

October 22, 2018
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Follow-up for babies with NAS or prenatal opioid exposure is essential for understanding risks and outcomes.

Despite the growing number of babies who are exposed to opioids in utero, researchers and clinicians still don’t have a strong sense of what the long-term developmental risks are. Part of the reason for this murky view is that a large percentage of infants with neonatal abstinence syndrome (NAS) and others who are exposed but not treated are lost to follow-up.

“We know a lot more about the long-term effects of marijuana, smoking, alcohol and even cocaine than we do about the long-term implications of opioid use during pregnancy,” says Mark Klebanoff, MD, director of the Ohio Perinatal Research Network and principal investigator in the Center for Perinatal Research at The Research Institute at Nationwide Children’s Hospital. “Following these babies as they age is a difficult task. They are often lost to care, and they don’t often participate in research studies.”

Even when follow-up is part of a standardized care path, as it is for all babies who are discharged from the neonatal intensive care unit (NICU) at Nationwide Children’s, opioid-exposed babies are more often lost to care.

Last year, 240 babies were referred to the Nationwide Children’s NAS Follow-Up Clinic. Only 67 percent completed new patient visits despite phone calls and the availability of social work support, says Nathalie Maitre, MD, PhD, director of the NICU Follow-Up Program at Nationwide Children’s. These numbers are comparable to or even a little better than those of most such clinics in the United States.

The high number of patients who have been lost to follow-up care has several implications. First, it means that many children are not receiving the additional neurodevelopmental surveillance and support they need. It also means that what clinicians and researchers are learning about the long-term neurodevelopmental effects of prenatal opioid exposure is based on a biased sample.

"Babies who are lost to follow-up may be the ones with the highest risk profiles, potentially leading current data regarding outcomes to underestimate the risks associated with prenatal [opioid] exposure." – Nathalie Maitre, MD, PhD

“Babies who are lost to follow-up may be the ones with the highest risk profiles, potentially leading current data regarding outcomes to underestimate the risks associated with prenatal exposure,” says Dr. Maitre.

She and her team in the NAS Follow-Up Clinic, led by Jennifer Haase, MD, have recently received a grant to increase the number of babies who receive specialized comprehensive follow-up care.

For the 79 infants referred to the NAS Follow-Up Clinic last year who were lost to care, Ryan Nicoll, LISW-S, identifies several barriers to care that families may experience.

“Barriers to follow-up for this population can be both socioeconomic and psychosocial,” she explains.

Socioeconomic barriers include lack of transportation, funds for gas, lack of childcare for siblings and lapses in insurance coverage. They also can include communication difficulties. “Many times, these families are relying on prepaid or government-subsidized phones, which can result in phone numbers changing frequently,” says Nicoll.

Psychosocial barriers include changes in custody status, concerns about stigmatization or lack of a support system to help facilitate coming to appointments.

“Our goal through the grant project is to remove as many barriers as we can,” says Dr. Maitre. “Sometimes, we need to schedule home visits with the physician and a therapist and actually go to the patient. Or, with the support of the clinic team and especially the social worker, we may offer an appointment at a research site that is less intimidating than the main hospital.”

By meeting the patients and their caregivers where they are, the team hopes to build trust and reintegrate families into the medical system while gathering data that will help the team understand the risks associated with this patient population. Their goal is 80 percent follow up, which is when researchers can start to trust their outcomes.

However, some babies who were exposed to opioids in utero were not treated in a hospital for NAS. Currently, the team cannot estimate how large this population is. But they are answering calls from pediatricians who are asking for more information on risk factors, early signs of developmental problems specific to exposed infants, and referral pathways.

One of the most prevalent identified problems for these infants is neuroregulation – the ability to balance their sensory inputs and outputs. Babies exposed to opioids before birth can appear fussy. They have difficulty integrating stimuli from the outside with what they are feeling on the inside.

“We see this in babies with NAS, but it may also be present in babies who were not treated for NAS. In some cases, the pediatrician may be the first to identify prenatal opioid exposure during a well-baby checkup,” says Dr. Maitre.

The grant will also support initial steps to develop an app for pediatricians that will enable them to assess babies with NAS or prenatal exposure for specific risks. And for physicians in Ohio and West Virginia, the app will ultimately help connect them to specialists and therapists who can help.

“For example, babies with NAS may be at higher risk for torticollis, as a study from our Cincinnati colleagues showed,” says Dr. Maitre. “With the app, the provider would enter clinical data into specific fields, such as birth type, APGAR, drug exposures – although drug exposure is sometimes a guess. Then, the PCP could be prompted at 3 months to look for signs of torticollis. If the physician is in the target area, they can connect directly to trained therapists through the app.”

In the meantime, Dr. Maitre and her team have begun a massive educational campaign to support early intervention by training more than 200 providers in Ohio and West Virginia in standardized neurological exams.

“As we get deeper into our research, we’re going to get better at caring for these babies. We’re going to know how to follow them. And we’re going to be able to tell pediatricians where to refer them,” she says.



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Photo credit: Nationwide Children’s