Start Here: If Your Child Was Just Diagnosed
If you’ve recently received a bladder exstrophy diagnosis, these resources can help guide you through the next steps.
Hearing that your child has been diagnosed with bladder exstrophy can feel overwhelming. Many parents describe the moment as confusing, frightening, and filled with unanswered questions.
If you are reading this page because you have just received a diagnosis, it is important to know that you are not alone. Families around the world have navigated this journey, and there is a strong community of medical experts, support organizations, and other parents who are here to help.
The Association for the Bladder Exstrophy Community (A-BE-C) was created to support individuals and families affected by bladder exstrophy through education, connection, and collaboration with experienced medical care.
This page will help you understand what bladder exstrophy is and guide you through the first steps after diagnosis.
If you’ve recently received a bladder exstrophy diagnosis, these resources can help guide you through the next steps.
After bladder exstrophy is diagnosed, doctors will work with your family to create a treatment plan and connect you with specialists who have experience treating the condition. Although every situation is unique, most families follow a similar path.
Specialists will evaluate your child’s anatomy and overall health. This may include imaging tests or consultations with pediatric urologists and other specialists.
Bladder exstrophy is treated through reconstructive surgery that places the bladder inside the body and supports bladder development and urinary function.
If your baby has just been born with bladder exstrophy, doctors and nurses will focus on protecting the bladder and preparing for surgery.
Bladder exstrophy is a lifelong condition that requires ongoing care and follow-up. Many families connect with support networks, advocacy organizations, and other families who have shared experiences.
Many parents say that the moment they hear the words “bladder exstrophy” is one of the most difficult moments they have experienced. It is common to feel a mix of emotions, including:
These feelings are completely normal. With time, information, and support, many families find confidence and strength as they learn more about the condition and connect with others who have been through similar experiences.
When you’re first navigating a bladder exstrophy diagnosis, having the right resources can make a meaningful difference.
A-BE-C offers trusted books designed to support both families and children at different stages of the journey.
For Young Children
A Story About You and Your Special Bladder helps young children understand their condition in a gentle, reassuring way. It’s a helpful tool for starting conversations and building confidence early.
For Parents and Caregivers
Bladder Exstrophy and Epispadias: A Compendium provides a deeper understanding of the condition, including treatment approaches, long-term care, and what to expect.
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 at birth and requires specialized surgical treatment.
Bladder exstrophy is part of a group of conditions known as the exstrophy–epispadias complex (EEC), which affects the urinary system and pelvic anatomy.
While the condition can be surprising and difficult to process at first, advances in surgical care have greatly improved outcomes. Many individuals born with bladder exstrophy grow up to lead active and fulfilling lives.
Learn more in our complete guide:
This helps parents navigate the site quickly and increases internal linking strength.
What type of bladder exstrophy does my child have?
How long will our baby stay in the hospital?
When will surgery take place?
What follow-up care will be needed?
How experienced is the surgical team with exstrophy repair?
After receiving a diagnosis of bladder exstrophy, many parents find it helpful to write down questions before meeting with specialists. Your healthcare team can help guide you through each step of the treatment process.
Families often find comfort and strength in connecting with others who understand the experience of bladder exstrophy.
Support communities can provide:
A-BE-C works to bring together individuals, families, and medical experts to improve care and support for everyone affected by bladder exstrophy.
Many families find it helpful to hear directly from medical experts and members of the bladder exstrophy community. These educational videos introduce important topics and answer common questions about the condition.
You can also download helpful educational materials, including the ebook created by Boston Children’s Hospital.
Many families who receive a diagnosis of bladder exstrophy initially feel overwhelmed. Over time, with support from experienced medical teams and the broader community, families often discover strength, resilience, and hope.
A-BE-C is here to help you navigate each step of the journey.