Babies born with prenatal opioid exposure (POE) can face developmental challenges as they grow, and our current systems of support do very little to help them. Every year, roughly 20,000 babies are born with POE in the United States and the extent of the problem varies dramatically by state, with some states having rates as much as six times the national average. Nobody knows these children better—and nobody wants to help them more—than their parents and caregivers. Indeed, in 2021, To the Moon and Back, a small nonprofit formed by parents and caregivers raising children with POE, reached out to ask Child Trends to survey and conduct focus groups with their families. This blog summarizes what we heard from them.
Existing research on children with POE indicates that these children can have cognitive, motor, language, and behavioral challenges. Our sample included children who were not walking at 18 months old, those who were not speaking at age 4, and school-age children who were unable to repeat things they were just told. Our research indicates these challenges can persist even after controlling for prenatal exposure to other substances and exposure to trauma.
Further, there is no standard of care, diagnosis, or system to support these kids beyond infancy. When children with POE are born, they can be diagnosed as experiencing opioid withdrawal and receive evidence-based care that centers on supporting the parent-infant bond and helping the infant eat, sleep, and be consoled. But then, the parents and caregivers are sent home with a baby and—too often—no education on the developmental challenges they may face or which services might help. Indeed, when we spoke with parents raising children with POE, they shared sentiments like this:
“I think the best word to describe the way I spend my life is terrified … I feel like our generation of kids are kind of the guinea pigs of this epidemic.”
In the absence of guidance, these families are left to try a range of things to support their kids. In our sample of families from Massachusetts and West Virginia, those who found their way to early intervention (see box) agreed it was one of the most helpful services. But when their children turned 3 and were no longer eligible, they then faced significant struggles to access school-based services. One person described their feelings about this lack of available services:
“… It's supposed to be a village, you know, working together to help these kids. And yet, I felt so isolated and so put down ... particularly by the schools … it was really [from] the schools that I got so much pushback.”
This kind of feedback inspired our partnership with To the Moon and Back to pilot and evaluate a school-based intensive case management program for kids with POE and their families. In our first year, we’ve helped kids receive needed evaluations and services and we’ve already prevented the unnecessary expulsion of a preschooler. We’re also training teachers, school staff, and community providers to be better equipped to work with these kids and families. To our delight and surprise, we’ve seen tremendous enthusiasm for the trainings: Over 70 percent of participants report that the training will change their day-to-day work in large, meaningful ways, and that it represents a very effective tool to combat stigma against children with POE and their families.
Our goal is that the findings from this work will inform a concrete standard of care for kids with POE to be built in partnership with parents, caregivers, teachers, and community providers. Stay tuned for what we learn!
Suggested citation
Wilkinson, A., & Harmon, T. (2025). Working with families to support the children of the opioid epidemic. Child Trends. DOI: 10.56417/8282j6755u