How is Bladder Exstrophy Treated?

Bladder exstrophy is treated with surgery. The type of surgery used depends on how severe the defect is. It is critical to work with a surgeon who is experienced with treating exstrophy experience.

Advances over the last 15 years have led to successful reconstruction. This includes reconstruction of the penis and bladder for a more "normal" and functional lifestyle.

The main goals of treatment are to:

  • Close the bladder, the back of the urethra, and the pelvis
  • Rebuild a penis that looks normal and works in boys/ the outer sex organs in girls
  • Fix the bladder so it can hold urine until it's time to urinate ("urinary continence") without harming kidney function

One form of treatment is "staged reconstruction." This involves parts of the above surgeries done over the early childhood years:

  • The first surgery is to close the bladder and pelvis. This is done just after the baby is born.
  • When the child is about 6 months old, surgery is done to rebuild the epispadiac urethra and penis.
  • When the bladder has grown large enough and the child is ready for potty-training (often around 4 or 5 years old), surgery is done on the bladder neck to achieve continence.

When the bladder's quality is good, and the penis size is good at birth, closing the bladder and penile reconstruction can be done in a "single operation" at an early age.

Both early and staged reconstruction have good results. If the bladder has grown enough and the surgeon is skilled, continence (control over urination) is possible. Often, further operations are needed over time to improve the child's ability to urinate. More surgery may also be needed to rebuild and/or make better the outer sex organs.

In more difficult situations, longer-term management is needed. Modern reconstructive surgery can still allow a baby to reach his/her late teens with successful results.