Help needed for rare childhood malady

Tue, 03/03/2009 - 4:14pm
By: Letters to the ...

I am a former PTC resident, current Newnan resident, in your coverage area, and a Fayette County teacher. I am the vice president of an organization called The Prune Belly Syndrome Network ( This is a medical, nonprofit (503c3) organization that exists solely for the purpose of finding a cause for the rare birth condition called “Prune Belly” or, the more official medical name, Eagle-Barrett Syndrome.

We are listed as a rare, genetic birth condition by the National Organization for Rare Diseases ( I am asking that you consider doing a story on my son’s condition to help educate the public as well as have a “close to home” human interest story.

The definition of Prune Belly or Eagle-Barrett Syndrome is a rare disorder characterized by partial or complete absence of the stomach (abdominal) muscles, failure of both testes to descend into the scrotum (bilateral cryptorchidism), and/or urinary tract malformations.

The urinary malformations may include abnormal widening (dilation) of the tubes that bring urine to the bladder (ureters), accumulation of urine in the ureters (hydroureter) and the kidneys (hydronephrosis), and/or backflow of urine from the bladder into the ureters (vesicoureteral reflux).

Complications associated with Prune-Belly syndrome may include underdevelopment of the lungs (pulmonary hypoplasia) and/or chronic renal failure. The exact cause of Prune-Belly syndrome is not known.

I am asking for your consideration to help The Prune Belly Syndrome Network not only because I am the V.P. on the board of directors, but also because my 2-year-old son was born with Eagle-Barrett Syndrome.

He has one kidney that sustained damage while in utero before he was born. He was also born with areas of decreased white matter in his head which have and will cause developmental delays. He only has a quarter of his corpus cullosum (the pathway in which signals fire back and forth from each side of the brain). He also has cystic lesions on his cerebellum which have caused seizures (expecting more) and it has affected his balance and verbal abilities.

My son sees a physical therapist, occupational therapist, speech therapist, neurologist, and urologist on a regular basis. He spent the first 10 days of his life in the local children’s hospital in Atlanta, has had five surgeries (two more possibly in the future), five MRIs, one sleep study, one swallow study, and had countless times he has had to have a catheter and given ultrasounds for his kidney.

I am even trying to get him into a private special needs school that I don’t know how I will afford.

Even with all that my son has been through, he is considered a mild case for Prune Belly and no two cases are alike. My son, as well as my daughter, is my world.

I would appreciate any help that a story would do to help promote my son’s rare condition. I, and the organization, just want to spread the word to the world and hopefully help find a cause. It can be a very scary thing when a new parent finds out about this like I did.

Jason Tuttle

Vice president, Prune Belly Syndrome Network

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Submitted by ugababe on Wed, 03/04/2009 - 10:08pm.

My son, too, has mild Prune Belly Syndrome. He is 11 months old. I live in Sugar Hill in Gwinnett County. Jason Tuttle is one of the few people I know in Atlanta who has a child with PBS. I found him on the Prune Belly Network, the only website I could find where parents and families of children with Prune Belly can interact and discuss problems, issues, concerns. From what I have read, this syndrome effects approximately 1 in 40,000 live births, 95% male. We spoke to several specialists before my son was even born because the perinatologist knew that my son had a blockage in his urinary tract. The urologist thought that there was a good chance that my son could be born with Prune Belly Syndrome. I had read quite a bit on the Prune Belly Network website about Prune Belly which can effect almost every system of the body. I was very nervous and scared because no one that I knew had ever heard of this condition. It was through talking to parents on the Prune Belly Network and getting some support from others going through the same kinds of things that I finally felt more at ease with dealing with my son's condition. I hope that you will consider writing about Jason Tuttle's son. There are other parents out there that could benefit from this information, and it could help raise awareness about this rare condition.

Thank you.
-Dana Foley

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