Welcome letter
 If you have opened this page it is likely that either you or a member of your family has been affected by bladder exstrophy or one of the associated abnormalities. We are here to help you and to answer any questions you may have.
The exstrophy/epispadias complex is a congenital birth defect that affects the bladder, the urethra, the genitals and the pelvis. Bladder exstrophy is the most common form of the complex, epispadias is at the minor end of the spectrum with cloacal exstrophy being the most severe form.
It is not known what causes bladder exstrophy/epispadias, however the problem occurs somewhere between the 4th-10th week of pregnancy when various organs, tissues and muscles begin to form layers that separate, divide and fold. It is thought that bladder exstrophy/epispadias is not inherited, however ongoing research is looking into this. Bladder exstrophy/epispadias did NOT occur because of anything the mother or father did or did not do during pregnancy.
Bladder exstrophy/epispadias occurs in approximately 1 in 30,000 - 50,000 live births and can sometimes be noted ante-natally. It is more likely to occur in males than in females and the risk of having a second child with bladder exstrophy/epispadias is approximately 1 in 100. If a parent has bladder exstrophy the incidence of having a child with the condition is approximately 1 in 70.
Bladder exstrophy/epispadias is a surgically correctable birth defect, however it must be remembered that each child is unique, therefore each child’s care is specific to individual needs.
If you have a question that you would like to ask a nurse please email me through the contact page.
Please remember no question is too stupid or too small to ask. If it is something that you have been thinking about it is worth asking, we are here to help.
Janet Fishwick
Senior Clinical Nurse Specialist
Department of Paediatric Urology
Central Manchester and Manchester Children’s Hospitals
Manchester, U.K. |
