| My Son's and Prunebelly Syndrome | ||||||||||||||||||||||||
| Information about Prunebelly and their lives | ||||||||||||||||||||||||
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Prune belly Syndrome also known as Eagle Barrett Syndrome. Definition: 1. Anterior abdominal wall: musculature deficiant or absent. 2. Urinary tract anomalies 3. Bilateral cryptorchidism. General: The incidence of prune belly syndrome is 1 in 40,000 live births; 95% of cases occur in males. In the past, it was suggested that the abdominal wall was deformed by pressure from a distended bladder due to bladder outlet obstruction in utero. Currently it is thought that prune belly syndorome is a multisystem disease complex which derives from a primary defect in mesodermal development. | |||||||||||||||||||||||
| This is the start of our story | ||||||||||||||||||||||||
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Our story starts with the first ultrasound, thats when we found out we were having twins and also that they had enlarged bladders at first the doctors thought maybe it was do to blockages or a defect but know one said for sure. We had to follow up with alot of ultra sounds, later in the pregnancy they even tried to drain one babies bladder but was unsecsesful and by then their kidneys were also dialated there was alot of concern by this time but know one could tell us anything. The boys were delivered six weeks early. The first born had problems from the start the secound had problems to but not as critical. The first born was Joseph he really started doing poorly and lab work really looked bad his story is the one I will tell the most about but after I tell you about his identical twin brother. The second child is Jeadan he had some problems also he was the one who got most of the placenta There were some concerns of liver problems with Jeadan but thank God nothing has developed as of today. Jeadan is growing fine and has had no signs that have been diagnosed as prune belly yet. Joseph was diagnosed with Prune Belly Syndrome and Chronic Renal Failure at about two weeks of age he had to be sent to Childrens Mercy Hospital in Kansas City, Mo. to get the diagnosis and we were told that it was rare and that very few survive, it was touch and go for awhile alot of trials with diferent medacines. He also had to have a super pubic cathater because his bladder was not functioning they thought that he would always have a cath. or some other means of being able to urinate. But suprisingly he started urinating on his own at about 3 months of age a welcome surprise to everyone, he was to have been on Dialasis and have a transplant for kidneys by 1 and 1/2 years of age but has done very well and has not had either yet and he is now 4 years old. Joseph has had surguries to bring his testicals down and has had hurnia surgury he also has what they call a G-Button for suplimental feedings and for meds. But in our case the suplemental foods didn't work they gave him diarea almost as quick as we gave the feedings. With Joseph the G-Button was important because we had a terible time getting him to take his meds and we know with out the meds his kidneys would fail soon. Most cases of Prune Belly Syndrome have reocuring infections and many other complications of which you can get more information about at some links that I will provide for you. Also I will give updates on my children as time goes by and will add as much information as I can find on PBS as I find it. If you are pregnant or know someone who is something to watch for is enlarged bladders on ultra sounds, don't be afraid to ask your doctor to check this out and it may very well be that it is not a problem for you but as I say lets be safe and try to learn as much as we can. | |||||||||||||||||||||||
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