Frequently Asked Questions

1. Is my baby going to die?
   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.

2. Why has this happened?
   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.

3. Could I/we have prevented this from happening?
   We are not aware of anything that you or your partner could have/have not done to prevent this from happening.

4. What are bladder exstrophy, epispadias and cloacal exstrophy?
   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, and the tummy button is in a lower position. 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.
   In cloacal exstrophy (the most severe form of the complex) the bowel is also affected.

5. Should this problem have been noted during pregnancy?
   The condition is sometimes detected during routine ante-natal scanning, however it is obvious at birth.

6. What is the treatment?
   It must be remembered that every case of bladder exstrophy/epispadias is different, therefore management is individualised. However your child will need surgical repair of the defect (picture 3).

7. Will my child lead a normal life?
   There is no reason why a child with bladder exstrophy/epispadias will not meet their expected milestones. He/she will crawl, walk and talk at the usual time, he/she will attend mainstream education. Many patients have very successful careers and there are a significant number of patients who have married and had their own children.

8. Will my child be incontinent?
   Your child will be able to gain continence however he/she may not empty their bladder in the normal way.

9. Could this happen to us again in future pregnancies?
   Bladder exstrophy/epispadias is a very rare condition and happens in approximately 1:50,000 live births. It is more commonly seen in boys than in girls and the risk of recurrence in a family is approximately 1:100.

10. Could this happen again if my child chooses to have children?
    The risk of bladder exstrophy/epispadias happening to children of individuals with bladder exstophy/epispadias is 1:70, this is a greater risk than in the general population.

11. Why do I have to come to Manchester or London?
    Paediatric urologists in the UK agreed that in order to ensure the best outcomes for children born with bladder/cloacal exstrophy and epispadias, care should be centralised into two centres, which are Central Manchester and Manchester Children’s University Hospitals in Manchester and Great Ormond Street Hospital in London.