FAQ's

Bladder exstrophy/epispadias is not a life-threatening or life-limiting condition. Indeed there are people living overseas who have never had treatment for their bladder exstrophy/epispadias and have lived to old age.

It is not known exactly why bladder exstrophy/epispadias happens, however research is ongoing to try and find the answers. It is known that the problem happens very early on in pregnancy, around the 4th- 8th week.

We are not aware of anything that you or your partner could have/have not done to prevent this from happening.

Classic bladder exstrophy is an abnormality of the lower part of the tummy where the bladder, the urethra (the tube that takes urine to the outside of the body), the pelvis and the genitalia are affected. The bladder is seen on the outside of the baby’s tummy, the urethra is open along the top side and not formed into a cylindrical shape as it should be. The pelvic bones do not come together completely at the front (this is known as diastasis).  In the boys the penis is tilted backwards and is shorter than normal (picture 1).  In girls the clitoris is split (picture 2).
Epispadias represents a less extensive form of the condition where the bladder is not visible outside the tummy (picture 3).
In cloacal exstrophy (the most severe form of the complex) the bowel is also affected (picture 4).

The condition is sometimes detected during routine ante-natal scanning, however it is obvious at birth.