So you have Prune Belly Syndrome? You may be nervous, scared, or not know where to turn. You may have known for a long time or just recently discovered that there is a syndrome and a name for what you have. You may wonder why you were born this way. We at the Prune Belly Syndrome Family are here to help you understand what this means and what you will need to do in order for you 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.

First let me say there are many, many false impressions out there about PBS. People are often told that their child will never walk or live a long life. As you are probably walking just fine, I guess you understand the untruth in this one. Another falsehood is that PBS means that you will not live a long life. 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. So - that dispells the second myth. Most people with Prune Belly Syndrome 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.

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 and the skin wriinkles 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 your internal organs. This soft belly does put you at an extra risk for internal injury if you get a blow to the abdomen.

So - what do you do now? First and foremost you need to find a Urologist who is familiar with Prune Belly Syndrome. You may also need a Nephrologist if you have any kidney damage, an Orthopedic doctor if you have any curving of your spine or bone issues.

There are some things you should watch for. Urinary Tract Infections are common in PBS as the bladder is usually very large and may not empty completely. If you are unable to empty your bladder completely, your doctor may have you insert a small tube (called a catheter) into your bladder at certain intervals to drain out the urine left in your bladder. If the urine is allowed to stay in your bladder over time, it will dramatically increase your risk of Urinary Tract Infections. It is important to have as few urinary tract infections as possible to preserve the functioning of your kidneys. Kidney function is something that your doctor will keep watch on byultrasound, scan or blood testing. One kidney can easily provide all the work for both and last a lifetime. Sometimes the kidneys fail and dialysys and a kidney transplant is needed.

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.

What you need to remember is that there are many, many people 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 !