Kidney, Reproductive and Urinary Conditions

Bladder Exstrophy

What is bladder exstrophy?

Bladder exstrophy (EK-struh-fee) is when a bladder is not formed correctly at birth. In most cases, the bladder and genitals are split in half, are turned inside out and sit outside the body. The skin and muscles of the lower belly (abdominal wall) don’t cover the bladder and hold it inside. The front parts of the pubic bone in the pelvis may be wide apart (diastasis).

There are many kinds of exstrophy.

  • A less severe form (epispadias) affects the tube that carries urine from the bladder to the outside of the body (urethra). 
  • A more severe form (cloacal exstrophy) affects the urethra, bladder, genitals and bowel.

With surgery and other treatment, children with exstrophy can lead normal, healthy, active lives.

Bladder Exstrophy at Seattle Children’s

As a Center of Excellence for bladder exstrophy, Seattle Children’s is known worldwide for our skill and research in caring for children with this condition. Our goal is to help your child have good bladder control and bladder health.

The experts you need are here

Your child will be treated through our Urology Department by surgeons, doctors and nurses who have experience with all aspects of bladder exstrophy. For most families, care begins with a visit to Urology’s monthly Bladder Exstrophy Clinic. When needed, we see your child sooner. 

Based on the organs affected, your child’s urologist may involve experts from other specialties, like gynecology, gastroenterology and orthopedics, through our Reconstructive Pelvic Medicine Clinic

We treat newborns and older children

Many of our patients come to us as newborns for exstrophy repair. We also treat many older children, including children who have had surgery somewhere else. We provide second opinions, too.  

If you are pregnant and an ultrasound shows that your baby may have exstrophy, our team can see you for an appointment. This is a chance to learn more about your baby’s condition and what to expect. 

Our approach to surgery improves quality of life

The method to repair bladder exstrophy with a single surgery was developed by Michael Mitchell, MD, former chief of pediatric urology at Seattle Children’s. With this method (complete primary repair), surgeons correct the condition in one stage, often just days after birth, instead of in many surgeries over several years. 

We use one-stage repair because it provides your child with the best results for a better quality of life. Richard Grady, MD, who was a fellow under Dr. Mitchell, teaches this complex method around the world. He also chairs the medical advisory council of the Association for the Bladder Exstrophy Community, a support network for patients and families worldwide.

We provide support to your child and family

A complete team cares for your child before, during and after surgery to meet both their early and long-term needs. For support, you have access to social workers, Child Life specialists and many others, like lactation consultants to help with breastfeeding your baby. We can also connect you and your child with other families dealing with exstrophy. 

Bladder Exstrophy in Children

Bladder exstrophy is rare. It happens in about 1 in 30,000 babies. It is more likely in boys than girls. Cloacal exstrophy happens in about 1 in 50,000 to 100,000 births.

There is no known cause for exstrophy. The problem occurs 4 to 8 weeks after a woman gets pregnant. This is when organs, muscles and tissues begin to form layers that separate, divide and fold. Exstrophy is not caused by something the mother did or did not do while she was pregnant. It does not run in families (it is not hereditary).