When I was born early Thanksgiving morning in 1996, the delivery team realized something was wrong and I was immediately transported to Boston Children’s Hospital to undergo a complete primary repair of my bladder exstrophy (BE). After the initial closure, I had follow-up bladder neck reconstruction when I was 10. Hoping that I would eventually increase bladder capacity and be able to void naturally, I spent the next few years incontinent until a sepsis-inducing bladder rupture pushed me to get a bladder augmentation and Mitrofanoff stoma. Despite a few setbacks, I was fortunate to be born near one of the best hospitals in the country for treating BE (but I might be biased). There were support group meetings hosted at the hospital twice a year for kids and their families to learn to manage their diagnosis and connect with others. Boston Children’s Hospital helped fund me to attend a weeklong overnight camp for kids with bowel and bladder conditions called “Youth Rally” as well. It wasn’t until college that I realized this was not the typical experience for those born with their bladder on the outside of their body. During an event in my sophomore year, one of the girls proudly exclaimed as her fun fact, “I can pee my name in the snow.” Having previously heard my female friends with exstrophy exclaim the same thing, I later asked if she catheterized through a Mitrofanoff and will never forget the look of recognition on her face. I was the first person with exstrophy she had ever met. Since that encounter, I have come across many people with the same condition who made it well into adulthood without a network of peers to look to for guidance and comfort (the oldest was almost 60). These friends and colleagues have had anything from hypospadias or epispadias to cloacal exstrophy impacting multiple organ systems. The combined obscurity and severity of cases along the BE-epispadias complex means that others born in different locations may receive a diverse and unpredictable standard of care. Poorly performed initial reconstructions can have significantly lasting negative impacts on patients’ quality of life and how they manage their congenital condition. I am now 27 and my last operation related to BE was 13 years ago. I have seen my pediatric urologists since then, and was given the names of specialists in North Carolina and Washington as I moved around the country, but my medical condition has been generally stable. Crossing paths, both virtually and physically, with so many other patients and families has led me to understand that there are many others who can get left behind as an adult when there is a strong belief that their birth defects are sufficiently cured in childhood. The combination of my reliable BE management techniques and generally transient lifestyle of undergraduate and graduate school has led to a pause in my transition of care. After so many stressful surgical experiences, it can be tough for me to proactively visit a doctor when the best news would be “everything is fine” and the worst news could mean another operation.

It turns out I was not the only person who reached this level of comfort and chose to minimize the impact of exstrophy on their life as much as possible. As a patient advocate for the Association for the Bladder Exstrophy Community, people have shared their similar experiences with me and it is easy to understand how people go decades without a routine checkup. Falling out from the community can make it more difficult to find a doctor who is willing and able to treat exstrophy patients when an emergency arises. Instead of referring patients through 1-on-1 meetings, there needs to be a more broadly established system to help them find reliable urologists and transition their care. There also appears to be a growing demand for more educational resources and tools to address potential problems within the adult population of BE. Polling of patients in 2018 through social media identified a multitude of needs across categories related to psychosocial concerns, adulthood health maintenance, and effective medical self-advocacy. It is unclear if members of the community still struggle with these issues, but we are now in a position to systematically address those needs through the creation of new tools, resources, and engagement. By gathering a group of adult BE patient volunteers and leveraging our existing connections with established pediatric centers of excellence, we are undergoing many projects to improve access to pertinent information. At the same time, we seek to strengthen our channels of communication between patients and providers to allow for better feedback on determining key metrics that help determine the long-term success of childhood interventions for BE. By providing more support to adults, we will be able to create safe spaces that promote open dialogue between patients, where they can cover sensitive topics that are important to them and make changes to improve their quality of life.