So your child has Prune Belly Syndrome? You may be nervous, scared, or not know where to turn. You may wonder why your child was born this way. We at the Prune Belly Syndrome Family are here to help you and your child understand what this means and what you will need to do in order for your child to live a long and healthy life.

Please understand that nothing in our website should be used in place of proper medical care. Finding a medical provider knowledgable in Prune Belly Syndrome is paramount and the PBS Family website should not be used in place but instead should complement your medical care and be a useful place of support.

I suspect that you may have been told such falsehoods as "your child will not ever walk", or "your child can not live long because he has Prune Belly Syndrome". . . . . First let me say there are many, many false impressions out there about PBS. Nearly all children with PBS will walk in their own time. Some walk at the usual time and others are delayed but almost all do walk eventually. As for a short lifespan, I personally know of 2 men in their 60's, 1 man in his 70's, and many men and women who have PBS and are in their 20's, 30's, and 40's. Prune Belly Syndrome does NOT mean your child will not live long. Many people live long and "normal" lives with PBS.

First let's consider what PBS is. Prune Belly Syndrome is a birth disorder where some or all of the abdominal muscles are missing or weakened, the urinary tract is not formed in the normal fashion, and in boys the testicles do not descend into the scrotum as they should. Around 95% of people with PBS are males (so for the sake of ease, I will use he or him to refer to those with prune belly syndrome).

As a newborn, often the baby has a wrinkled appearance to the tummy as the missing muscles allow some of the bowel to be seen and also because the abdomen which was very swollen with a large, full bladder is smaller after birth and the skin wrinkles down. As a toddler, the child often has a "poochy" belly. I used to say my son looked a bit like the Pillsbury Dough Boy. The belly of a child with PBS is softer then a child without it. The doctor will find it very easy to feel the internal organs of your child. This soft belly does put your child at an extra risk for internal injury if he gets a blow to the abdomen.

So - what do you need to do for your child? First and foremost you need to find a Pediatric Urologist who is familiar with Prune Belly Syndrome. This doctor will follow your child and probably do some surgeries over the first few years. The urologist will bring your son's testicles down into the scrotum where they belong. This is usually done early (usually in the first year of life) and may need to be done in 2 or 3 surgeries depending on how high up in the abdomen the testicles are in your son.

There are some things you should watch for. Urinary Tract Infections are common in children with PBS as the bladder is usually very large and may not empty completely. If your child is unable to empty hit/her bladder completely, your doctor may have you insert a small tube (called a catheter) into him/her bladder at certain intervals to drain out the urine left in the bladder. If the urine is allowed to stay in the bladder over time, it will dramatically increase your risk of Urinary Tract Infections.

Another thing to be careful of are Upper Respiratory Infections commonly known as a cold. Since the diaphram is an abdominal muscle at the top of the abdomen and is critical to coughing, some people with PBS have a poor cough and are at a much greater risk of pneumonia. A pneumonia left untreated can be life-threatening. Sometimes the lungs are not as fully formed with a child with PBS as the huge bladder sometimes presses upward to the chest and inhibits the formation of the lungs. Some children with PBS have no lung issues. If your child does have a poor cough or underformed lungs at all, you will want to find a Pediatric Pulmonologist to follow your child.

What you need to remember is that there are many, many families worldwide who have been exactly where you are right now and are very willing to help you and share their tips and stories. Please go to our Support Forum and join to find us all !