Bladder exstrophy is a serious birth defect. The bladder is incomplete and opens to the surface or to an opening in the abdominal wall. Urine from the kidneys drains into this open area instead of into an enclosed bladder. The lining of the bladder is attached to the skin of the abdomen and the pubic bones are not in place to form a protective cavity around the bladder and reproductive organs. The kidneys of a child with bladder exstrophy are typically normal but the rest of the urinary drainage system is often affected, including the genitalia. There is a large range of severity in bladder exstrophy: the abdominal opening may be small and easily closed, or it may be very large and the defect may involve the genitals and pelvis as well. Bladder exstrophy is rare disorder that happens in about 1 in 30,000 babies. It is more likely in boys than girls. There is no known cause of bladder exstrophy but it does run in families, with a rate of 1 in 100 births in families that have already had one child with the condition. Our program has been tracking bladder exstrophy among live births in select counties since 2005 and gradually are expanding statewide.
- Using data from births to Hennepin and Ramsey county residents between 2012-2016, we found that fewer than 1 baby was born with bladder exstrophy per 10,000 births.
- Using this data, we estimate about 2 babies are born with bladder exstrophy every year in Minnesota.
Parental education and support are essential, and local, regional and national organizations may be very helpful.
Condition specific organizations
- Association for Bladder Exstrophy Community
- The Pull-Thru Network
- Exstrophy of the bladder - National Institutes of Health
- Bladder Exstrophy