In Plain English - For New Parents

PRUNE BELLY SYNDROME
Prune belly syndrome gets its name from the wrinkled abdomen of children with the syndrome.

Some or all of the abdominal muscles may be missing.

There may be associated kidney or urinary problems.

Doctors sometimes do not hold out a lot of hope for children with the syndrome.

We believe that is is a result of sparse research on the syndrome and that this prognosis does not take recent medical advances into account.

Don't misunderstand -- many of the children with this syndrome are seriously ill.

Some of the sickest babies do die.

The problems with the urinary system can cause other health issues if wastes and toxins build up in the body.

Children with the syndrome may need several surgeries while they are very young and some are rather frail as toddlers.

The good news is that based on our collective experience it seems that a lot of such children go on to lead happy and active lives.

You can read about real people with prune belly syndrome in out About Us section.

Mild cases of prune belly syndrome may have few symptoms indeed and be quite healthy.

The cause of prune belly syndrome is unclear.

It does not seem to be genetic.

We have received two separate reports of identical twins where one child has the syndrome and one does not.

No particular factor in the environment has been associated with it.

However, neither of these questions has been addressed by a formal medical study.

At some point before birth the abdominal muscles and urinary organs do not develop right.

There may be structural problems with the urethra or the anus which require surgery right after birth.
Often the bladder does not drain completely.

This requires medical attention since it can cause infections.

Depending on the severity of the child's condition, one or more surgeries can be required in the first year of life.

Reconstruction of the bladder, or urethra may be needed, or even the removal of a non-functioning kidney.

Surgical techniques exist to treat the lack of stomach muscles.

Testicles may need to be brought down surgically.

Odds of fertility in later life seem to be improved if this is done early.

It also seems that some form of in-vitro fertilization is needed for a man with this syndrome to father children of his own.

It is difficult to say what you can do to help your child.

So much depends on the symptoms and their severity.

But you certainly can stand up for your child.

Be his advocate.

Ask questions.

Demand answers.

This is your child, and if you don't fight for him, who will?