What is Bladder Exstrophy?
Bladder exstrophy (x-tro-fee) is a bladder that is not formed right. The word Exstrophy is derived from the Greek word ekstriphein, which literally means to “turn inside out.” Bladder exstrophy is a malformation of the bladder, in which the bladder and genitals are split in half, turned inside out. The skin of the lower abdominal wall that normally covers the bladder also does not form properly and is separated, thus exposing the inside of the bladder to the external world. If you imagine a balloon that has been split and opened up so that the inside of the balloon is visible, you will have a picture of what has happened.
Bladder exstrophy is a rare and initially devastating, congenital birth defect that results from abnormal development of the cloacal membrane and occurs in 1 in 30,000-50,000 births. Repair of the exstrophied bladder requires surgical reconstruction. With current medical procedures, the patient with exstrophy has a good chance for urinary continence with surgical reconstruction or through intermittent catheterization. However, this positive medical outcome occurs through great pain and sacrifice on the part of the children and their families. The child with exstrophy may undergo multiple surgical procedures, associated lengthy hospitalizations, and many repeated outpatient visits and treatments, all of which impact the child’s psychosocial, cognitive, and behavioral development.