Coping and support

Having a baby with a significant and rare birth defect such as bladder exstrophy can be extremely stressful. It's difficult for doctors to predict how successful surgery will be, so you're facing an unknown future for your child.

Depending on the surgery's outcome and his or her degree of continence, your child may experience emotional and social challenges. A social worker or other behavioral health professional can offer your child and your family support in facing these challenges.

Some doctors recommend that all children with BEEC receive early counseling and that they and their families continue to receive psychological support into adulthood.

You may also benefit from finding a support group of other parents who are dealing with the condition. Talking with others who've had similar experiences and understand what you're going through can be helpful.

It may also be helpful to keep in mind that children with bladder exstrophy have normal life expectancies, and a good chance of living full, productive lives with work, relationships and children of their own.