1. Is there anything I can do to help my child?
There is a lot you can do to help your child. So much depends on the symptoms and their severity. Perhaps the most important thing you can do is to stand up for your child. Be his or her advocate. Ask questions. Demand answers. This is your child, and if you don't fight for him or her, who will? Please be sure to register as a member and interact on our public and private forums where you will be able to read a LOT from other families dealing with PBS. You can post any question you might have.
2. Was there anything I did in my pregnancy to cause PBS?
We have received two separate reports of identical twins where one twin has the syndrome and the other does not. No particular factor in the environment has been associated with PBS. We want to stress that there was NOTHING you did that caused your child to be born with PBS!
3. Is PBS genetic?
The cause of prune belly syndrome is not currently known. It is not proven to be genetic, although there are several families who have more than one child with PBS. There are many more families who have only one child with PBS and other children without it. Much more research is needed to determine the actual cause of the syndrome.
4. Is there anything I should look out for?
Urinary tract infections (UTIs) are common and something that you should watch for. Fever, irritability, trouble urinating, or blood in the urine are signs of infection. You should take your child to a doctor for a urine culture if you suspect an infection. A UTI left untreated can become a kidney infection and damage the kidneys. Antibiotics usually treat a UTI quite well. Often, antibiotics can be given by mouth (a liquid to drink) but sometimes they may be given intravenously (IV) in the hospital if the infection is severe.
5. Are there any procedures available to cosmetically correct the "prune belly" appearance?
YES! Talk with your doctor and check out our support forum as well as our What is PBS?/Abdominal reconstruction page for more information.
6. Will my male child ever be able to father children?
His testicles will need to be brought down surgically in an orchiopexy procedure. This operation is usually done by 6 months of age, but sometimes it has to be delayed due to more pressing medical issues. (A pediatric urologist will perform this surgery.) Orchiopexy can be performed at any time, but fertility in later life seems to be improved if the operation is done early, which is becoming standard.
The PBSN currently knows of three women with PBS who have given birth to children, and several men with PBS who have fathered their own biological children!