The article in the Wall Street Journal, The Challenges After Surviving a Childhood Disease, puts on the national stage an issue that has been a growing concern for many in our community, including the dedicated pediatric neurosurgeons and neurologists that work with our families. The concern is the difficulties in transitioning from pediatric- to adult-centered care for the on-going management of hydrocephalus.
It is estimated that 1 to 2 out of every 1000 infants is born with hydrocephalus, though anyone at any age can acquire hydrocephalus from a brain hemorrhage, infection, tumors, or trauma, among other causes. Hydrocephalus, a neurological condition in which cerebrospinal fluid accumulates in the brain, has no cure and the only treatment option requires brain surgery. The prevalent treatment is the placement of a shunt to drain fluid from the brain to another part of the body where it can be absorbed. Prior to the introduction of an effective treatment for hydrocephalus, most individuals did not survive. However, with advances in diagnosis and treatment since the 1950s, the majority of individuals with hydrocephalus are transitioning into adulthood. This transition comes with significant challenges of its own.
As the article points out, what many teens and young adults in our community face is difficulty finding a neurologist or neurosurgeon willing to manage their care. The article features Adrienne D’Oria of New Jersey. D’Oria, who is 21 years old and has had 50 surgeries over her lifetime, has been declined by two neurosurgeons to take on her case. Hydrocephalus is a complex condition where individuals growing up with hydrocephalus often endure repeated brain surgeries to revise their shunt, as is the case with D’Oria. Shunts have a 50% shunt failure rate within 2 years after placement for children. Due to the complexity of their cases and the need for repeated and managed care, many doctors tend to shy away from taking on transitioning young adults. For teens who are aging out of pediatric hospital settings where treatment is often not allowed after the age of 18, finding a medical team to take on adult care as well as learning how to be advocates for their own medical condition is a necessity.
The Hydrocephalus Association provides support and resources to individuals across the age spectrum, from infants to seniors. Transition has always been a focus of the association and, to that end, we have worked with our Medical Advisory Board to support our teen and young adult community. Our Teens Take Charge (TTC) program trains teenagers and young adults (and their siblings) to become advocates with both health professionals and with their legislators. It is also a place for teens and young adults to meet others living with hydrocephalus to provide peer support and friendship. As part of the association’s commitment to funding research to find better treatment options and, ultimately, a cure for hydrocephalus, the association provides funding to sustain the pediatric-focused Hydrocephalus Clinical Research Network (HCRN) and the newly-formed Adult Hydrocephalus Clinical Research Network (AHCRN). Both of these networks unite leading scientific and medical minds in hydrocephalus care and research to better the quality of life for individuals across the age spectrum.
We are grateful to the Wall Street Journal and reporter Laura Landro for addressing this issue and for choosing to highlight hydrocephalus within this discussion. If you find yourself in this transitioning population, please take a moment to look through our resources. We are also here to support you via phone (888-598-3789) or email (email@example.com) as you navigate this journey.
- Health Care Transition Guide for Teens and Young Adults with Hydrocephalus
- Hydrocephalus Diagnosed in Young and Middle-Aged Adults
- College and Hydrocephalus
- Audio and some video files of sessions from our dedicated Teen and Adult educational tracks at our biennial National Conferences on Hydrocephalus – please check our website for when they will be available.
- July 2013 interview with Dr. Kestle where he addresses transition for our community.
- August 2013 interview with Dr. Flannery where she addresses transition for our community.
Teens Take Charge Facebook page for teens and young adults
Find TTC on Twitter, too! @TeensTC or search #hydrocephalus and #TalkTTC