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 Minnesota births between 2014-2018, we found 7 babies were born with bladder exstrophy, resulting in a rate of 0.2 babies per 10,000 births. Annually, about 1 babies were born with bladder exstrophy. Parental education and support are essential, and local, regional, and national organizations may be very helpful.