Exstrophy of the bladder (bladder exstrophy)
We expect that your child will be a capable participant in any and all of life's joyful moments and childhood activities. Your child's experience should be much the same as any other child, with the understanding and appreciation of the fact that every child's life is unique.
Joseph G. Borer, MD, Director of Center for Exstrophy, Boston Children's Hospital
Bladder exstrophy—when a child is born with the bladder exposed on the outside of the lower abdominal wall—can seem particularly scary. The good news is that, although this is a rare condition, we have treated many national and international children with bladder exstrophy here at Boston Children’s Hospital Center for Bladder Exstrophy. Here’s a synopsis of the important aspects of the condition and information on the many support services available to your child and you.
- Bladder exstrophy is a complex congenital anomaly, meaning that your child was born with the condition.
- Children with the condition are born with the bladder exposed inside-out on the surface of the body.
- Bladder exstrophy is very rare: Only about 400 babies are born with bladder exstrophy each year in the United States
- It’s more common in boy babies than girl babies.
- In the healthy full-term baby, initial surgery is usually performed at 2-3 months of age.
- With treatment, your child should be able to enjoy an active childhood.
- Children with bladder exstrophy may need extra treatment with medication or surgery in order to have control over their bladders (urinary continence).
How Boston Children’s approaches exstrophy of the bladder
Although this is a rare condition, we have treated many children with bladder exstrophy from across the country and the world here at Boston Children’s Center for Bladder Exstrophy.
Unique approach to treatment
Some hospitals treat bladder exstrophy using a planned three-stage surgical approach called the Modern Staged Repair of Exstrophy (MSRE). The MSRE approach includes separate stages of initial bladder closure (first stage), epispadias repair (second stage) and a third stage surgical procedure when a child is about 5 years old called Bladder Neck Reconstruction (BNR). This last surgery is a standard operation performed in order to help your child become continent of urine (appropriately dry/without leaking urine).
Instead of this method, at Boston Children’s, we use an approach called the Complete Primary Repair of Exstrophy (CPRE). This involves an advanced single-stage surgical procedure during which the surgeon attempts to bring about all of the benefits of the three stages of the staged MSRE approach. Our single-stage surgical approach is usually performed within the first few months after a baby is born.
Our team is aware of the fact that the family is the most important source of emotional support and comfort for children, so we consider family members a vital component of each child's health care team. We encourage you to call any time to speak with your child's nurse or doctor as well as members of our psychosocial support team (a social worker, psychiatric nurse and Child Life specialist).
Network of support
At Boston Children’s, we’ve found it helpful to connect parents and create a support network of families grappling with the effects of exstrophy of the bladder.Additionally, our Exstrophy Support Group, created in 1992, offers programs for families, children and teens with the condition.
Our interdisciplinary team offers additional psychosocial supports, in addition to the services of a social worker, Child Life specialist and psychiatric nurse. The Center for Families, pastoral care, Interpreter Services and Case Management Services can also be key components of the care we extend to your family. Of note is our Center for Families’ Patient Family Housing Program, which can assist you with your accommodation needs if you’re traveling to Children’s from a distance.
|Learn more from our team|
As part of our ongoing effort to bring advanced care and technology to specialists and referring physicians around the world, and to educate patients and families about the latest and most innovative medical treatments available, we held an interactive webcast of experts discussing the condition. Here, you can watch the full 60-minute interactive Webcast with Joseph G. Borer, MD, director of Children's Center for Bladder Exstrophy.
If you’d like to just see part of the Webcast, choose from the chapters below:
2:20 What is Bladder Exstrophy?
5:40 Diagnosing Bladder Exstrophy
10:00 Children’s Advanced Fetal Care Center
17:53 Summary of Care for Bladder Exstrophy
21:10 CPRE surgery
41:50 The Bladder Exstrophy Support Group
44:54 One Family’s Experience