What is Bladder Exstrophy?

Bladder exstrophy

A baby born with bladder exstrophy.

A bladder not formed correctly

Bladder exstrophy (EK-struh-fee) is a bladder that is not formed correctly at birth. In most cases, the bladder and genitals are split in half, turned inside out and sit outside the body. The word “exstrophy” is derived from the Greek word ekstriphein, which literally means to “turn 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.

1 in 30,000-50,000 births

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.

There are different types 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 treatment, children with exstrophy can lead normal, healthy and active lives

Repair of the exstrophied bladder requires surgical reconstruction. It is critical to work with surgeons who have knowledge of and experience in treating the condition. With surgery and other treatment, children born with exstrophy can lead normal, healthy and active lives.

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.

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