Danielle and Marlon live hundreds of miles apart, but their stories echo one another’s. Both were born with Spina Bifida. Both grew up cared for by doctors who knew their complex medical needs and treated them like family. And both discovered, as young adults, what families call the “Adult Care Cliff ”—when young adults leave the guided and specialized pediatric care they’ve known and trusted and are forced into a fragmented, adult care system that does not understand them.
This crisis in care is playing out in real time for young adults across the country. Danielle and Marlon are two of many who’ve had to navigate this difficult transition. Here are both their stories.
Danielle’s Story
At just 18, Danielle had already endured more than 20 surgeries. She was excited for college life—a first taste of independence. But on her first day of freshman year, she was rushed to the ER for brain surgery. Gone were the familiar faces of her lifelong care team and her mother’s reassuring voice. In their place stood doctors unfamiliar with her history or the complexities of Spina Bifida. This was her Adult Care Cliff—the point where pediatric specialists disappear, and few adult providers are prepared to take their place. This leaves young adults like Danielle to navigate complex care, unprepared and feeling alone.
“I’ve had 18 years of practice learning how to advocate for Danielle and navigate the healthcare system. Then, overnight, doctors started looking to her for answers she didn’t know how to give. She wasn’t prepared—and how could she be?” – Marie, mom to Danielle.
Marlon’s Story
Marlon, now 26, remembers his compassionate “one-stop” pediatric clinic in Atlanta— a familiar place where multiple specialists collaborated to provide integrated care for his health needs. But when he turned 21, that ended. Suddenly, he had to piece together his care across multiple hospitals and specialists—none of whom specialized in Spina Bifida.
At times, he’s even had to teach his doctors about Spina Bifida. Marlon recalls, “If there isn’t an adult Spina Bifida clinic near you, you’re forced to see a general physician who is maybe familiar with other ‘back problems’. You feel like you end up educating them on your own condition.”
Today, he works at Vanderbilt University’s Student Accessibility Services office and runs his own inclusive clothing brand. He’s proud of what he’s built—but he knows many others are facing the same challenges with care and support.
SBA is Committed to Solving the Adult Care Crisis
Everyone with Spina Bifida deserves effective, lifelong care that shouldn’t stop when they reach adulthood. The Spina Bifida Association is committed to growing access to adult healthcare providers who understand the unique and complex medical needs of people with Spina Bifida, and teaching adolescents and young adults to be strong advocates for their own care – and their futures.
You Can Create a Future Where Lifelong Care is Available to Everyone
Your gift becomes the bridge that will:
- Train healthcare teams to understand the unique needs of adults with Spina Bifida.
- Improve access to adult medical providers who are willing and able to treat adults with Spina Bifida.
- Help young adults learn to advocate for their own care, and become active participants in their transition from pediatric to adult care.
Every $50, $100, or $250 gift helps build a healthcare system that doesn’t abandon Danielle, Marlon, and thousands of others at adulthood. This special holiday season, stand with Danielle and Marlon. Together, we can eliminate the Adult Care Cliff.
