You Are Part of a Community
No one has to navigate bladder exstrophy alone. Through shared experiences, education, and connection, the bladder exstrophy community continues to support individuals and families around the world.
Bladder exstrophy is a rare congenital condition that many families have never heard of before receiving a diagnosis. Because the condition is uncommon, parents and individuals often have many questions about symptoms, treatment, daily life, and long-term outcomes.
This FAQ guide answers some of the most common questions people ask about bladder exstrophy. For more detailed information, you can also explore our guides on symptoms, causes, diagnosis, treatment, and living with bladder exstrophy.
Bladder exstrophy is a rare congenital condition in which the bladder and lower abdominal wall do not close properly during fetal development. As a result, the bladder forms outside the body on the lower abdomen. The condition also affects the pelvic bones and urinary tract.
Bladder exstrophy is part of a group of conditions known as the exstrophy epispadias complex (EEC).
Bladder exstrophy is considered a rare condition. It occurs in approximately 1 in 30,000 to 50,000 live births worldwide.
Because the condition is uncommon, many families seek care from specialized centers and pediatric urologists experienced in treating bladder exstrophy.
Bladder exstrophy itself is not typically life-threatening when treated appropriately. With modern surgical care and long-term medical follow-up, many individuals live healthy lives.
However, treatment and monitoring are important to protect bladder and kidney function.
The most recognizable symptom is a bladder that forms outside the abdomen at birth. Other physical features may include pelvic bone separation, differences in genital anatomy, and urinary leakage because the bladder cannot store urine normally.
In some cases, bladder exstrophy can be detected during prenatal ultrasound. Doctors may notice that the bladder is not visible inside the abdomen or that the lower abdominal wall appears different than expected.
However, not all cases are diagnosed before birth.
Bladder exstrophy is often diagnosed at birth through a physical examination. Doctors may also use imaging tests such as ultrasound to evaluate the urinary system and confirm the diagnosis.
Pediatric urologists typically perform a detailed evaluation to plan treatment.
Treatment usually involves reconstructive surgery performed by pediatric urologists. Surgery aims to place the bladder inside the body, reconstruct the urinary tract, and support bladder growth and urinary continence.
Some children receive a single-stage repair shortly after birth, while others undergo staged reconstruction procedures over time.
Many children with bladder exstrophy require additional procedures during childhood or adolescence to improve bladder function or urinary continence. Treatment plans vary depending on each child’s anatomy and medical needs.
Advances in surgical techniques have significantly improved outcomes. Many individuals achieve improved bladder function and lead active lives, although long-term follow-up with specialists is important.
Bladder exstrophy is a rare and complex condition. Providers with experience in exstrophy care are better equipped to deliver optimal outcomes.
Yes. Most children with bladder exstrophy attend school and participate in educational activities with their peers. Some families may work with school staff to provide accommodations related to medical care or recovery after surgery.
Many children and adults with bladder exstrophy participate in sports and physical activities. Doctors may provide guidance on safe participation depending on medical history and recovery after surgery.
Yes. With proper planning and access to necessary medical supplies, many individuals with bladder exstrophy travel and participate in everyday activities.
Some children may benefit from accommodations such as bathroom access, catheterization time, or a 504 Plan to support their medical needs.
Most individuals with bladder exstrophy have a life expectancy similar to the general population, particularly when they receive appropriate medical care and regular follow-up with specialists.
Yes. Because bladder exstrophy affects the urinary system, individuals typically continue seeing urologists throughout adulthood to monitor bladder and kidney health.
Many adults with bladder exstrophy form relationships and families. Some individuals may have questions about fertility or reproductive health, and healthcare providers can offer guidance based on each person’s situation.
Families often benefit from connecting with organizations and communities that understand the condition. Support groups, educational resources, and peer connections can help families navigate treatment and daily life.
Organizations like A-BE-C (Association for the Bladder Exstrophy Community) provide resources, education, and community connections for individuals and families affected by bladder exstrophy.
Yes. Many individuals and families connect through support groups, conferences, online communities, and advocacy organizations focused on bladder exstrophy awareness and education.
These communities can provide valuable emotional support and shared experiences.
Yes. Many families feel overwhelmed at first. With time, education, and support, most families find their way and build confidence in managing their child’s care.
The initial diagnosis may be overwhelming, but ABEC and all of our partners have dedicated significant amounts of time and effort to improve the quality of care available across the US and abroad. Check out our pages about bladder exstrophy to learn more about the condition and to develop a management plan that works for you. A great place to start is our “I’m New Here” page!
We recommend looking at our list of Centers of Excellence. We work with pediatric urologists and their support teams at hospitals across the country and around the world to identify which programs have an established track record of providing high quality care for exstrophy patients.
If none of these hospitals are an option, you can send us an email and we will try our best to connect you with additional options.
We are constantly striving to add new tools and resources to our website. Educational materials can be found in
In addition to these resources, we hope you browse the other pages on our website as you may find other helpful areas of support. If you have questions or would like to see the creation of new materials, please send us your suggestions.
This will vary depending on what point you are at. The two main things to prepare are previous medical records and a list of any current concerns or questions you might need answered during the visit.
If your child has been prenatally diagnosed, and you are going to visit a pediatric urologist for the first time, prepare by familiarizing yourself with exstrophy using this website or information from any of our partners (such as the Centers of Excellence).
If changing to a new specialist, you may also want to come up with a list of questions to understand how they typically treat other exstrophy patients and if their priorities and concerns align with yours.
Receiving a diagnosis of bladder exstrophy can feel overwhelming, and it’s completely normal to have many questions.
In the early stages, it may help to:
You do not need to navigate this alone. Organizations like A-BE-C can help guide you to trusted resources, experienced providers, and a supportive community. To learn more, start here.
Many children born with bladder exstrophy go on to live full, active, and meaningful lives.
While there may be medical care and challenges along the way, children with bladder exstrophy can:
Every journey is unique, but with the right care, support, and resources, children can thrive and reach their full potential.
We are working to build our resources for adults with exstrophy, including adding resources regarding transitional care. But here are a few tips you may find helpful.
Transitioning to new doctors – primary care physicians or specialists – of any type can come with difficulties. It is important to have a plan in place to maintain consistent care. The first step is to talk with your pediatric providers to understand their policies and see what local resources are available as many pediatric clinics have a network of adult providers that they refer to and some have close connections with them to pass off management. We are currently developing new tools to help make this process easier, but until those are available, there are online generic resources (like gottransition.org) that may provide a helpful framework to get started.
We are actively establishing a database of specialists across the US who have a track record of providing quality care for exstrophy patients. Until this list is posted, please reach out to patient@bladderexstrophy.com if you have any questions. It can also be beneficial to directly contact any pediatric providers you know to ask for recommendations.
We have some links to online support groups, but here are some other resources:
We recommend contacting any of our listed Centers of Excellence for direct assistance with providing medical care for exstrophy patients. We would be happy to provide introductions if that makes the process easier. These institutions (and many others such as the Mayo Clinic) have generic informational pages about bladder exstrophy as well.
Institutions are welcome to apply to become a designated Center of Excellence. We have a network of specialists involved with our medical advisory board that help evaluate each program across a range of major criteria that we have identified is critical to achieving successful outcomes for exstrophy patients.
We would love to have more providers join our network if they would like to help. Please reach out to patient@bladderexstrophy.com to indicate your interest and we will find a time to meet.
There are several ways to help improve care.
We hope to aid providers by helping them connect with the established community. Many of our clinical partners have played pivotal roles in setting gold standards to diagnose, treat, and manage exstrophy. By bringing them together, virtually and in-person, we are working to expand our collective understanding of the condition and make it more accessible to the patients, families, and physicians who need it the most.
Yes. With planning and support, children with bladder exstrophy can attend school, participate in activities, and build friendships like their peers.
In many cases, yes. With preparation and communication, children can often participate fully in school and recreational activities.
Yes. Bladder exstrophy is treated through surgery, often in stages, along with long-term medical care and follow-up.
The number of surgeries varies depending on the individual, but treatment often involves multiple procedures over time.
Outcomes vary. Some individuals achieve continence, while others may continue to manage urinary function through catheterization or other approaches.
Yes. Many families feel overwhelmed at first. Support, education, and connection with others can help you navigate the journey.
Yes. There is a global community of individuals and families living with bladder exstrophy. Support groups and organizations like A-B-E-C can help you connect.
The Association for the Bladder Exstrophy Community (A-BE-C) is a group of exstrophy patients, family members, and medical professional volunteers who want to help improve patients’ lives.
A-BE-C works to improve care and quality of life for individuals with bladder exstrophy through education, global partnerships, support resources, and advocacy initiatives.
There are many ways you can get involved. Check our support page for local support groups, or form one of your own. You can also organize a fundraiser on behalf of A-BE-C in your local community. We are always looking for volunteers within the organization as well, so send us a message!
No one has to navigate bladder exstrophy alone. Through shared experiences, education, and connection, the bladder exstrophy community continues to support individuals and families around the world.