Conditions like Chiari malformation, hydrocephalus, and spina bifida are often treated by pediatric neurosurgeons, but the need for continuous care for these disorders extends well beyond the transition to adulthood. In fact, becoming an adult often marks the start of new challenges… and finding the adult providers who truly understand these complex conditions isn’t easy.
As medical science improves, more young patients are living longer, healthier lives… but our healthcare system has yet to catch up. Many adult providers simply aren’t trained to manage these disorders long-term or are not comfortable because they see so few patients like this. Often, patients are forced to leave the pediatric specialists who know them best. Some diagnoses also come with their own, unique challenges that make living independently difficult for these burgeoning adults.
In all, this can leave these newly minted adults with no experts to turn to, causing significant anxiety in these patients and their parents. One BJCSF volunteer from Ohio described the issue perfectly. “I’ve seen this firsthand with my two nephews,” he said. “When they aged out of pediatric care, finding adult specialists willing to take their cases was difficult— and honestly, really scary.”
BJCSF is aiming to close the gaps in care that are caused by this clunky transition period. We have partnered with the AANS/CNS Joint Section on Pediatric Neurosurgery and like-minded patient advocacy organizations like the Hydrocephalus Association and the Spina Bifida Association to directly assess and address this important issue. Together, we’re identifying challenges, training adult providers, and building a standardized process so no patient gets lost in the transition to adult care.
We believe, firmly, that every patient should have the opportunity at a healthier, more hopeful future.
We completed interviews with existing transition programs and started our preliminary outreach work. In July 2025, we submitted 6 abstracts to present at the upcoming annual meeting of the Joint Section in December 2025. Five of the six submitted were accepted to the meeting.
This is just the beginning as we start to dig into more trainings and ongoing work to make a difference. As we are able, we will update this page with news.
Updated: 10/2025
