This is my son Kaden. He is seven years old and truly my "miracle". When I was 14 weeks pregnant with Kaden, during a routine ultrasound, my doctor saw something that was not "right". I began seeing a Parinatal specialist who, through amnioscentisis (among other tests), could not diagnose exactly what Kaden had. I was told that he would not make it in the womb through the entire gestational period and would need a minor surgery at birth to fix what they were calling Posterior Urethal Valves. When I was 28 weeks pregnant, the specialist said that I would need to deliver him immediately. I was given two doses of steriod treatments and had Kaden. As soon as he was born, before I could hold him or even touch him, they transported my son to the NICU at Cooks Children's Hospital in Fort Worth. Four hours later after pleading with my doctor, I made it up to the hospital where the NICU team came and talked to me and informed me that my son's condition was more severe than anticipated and said that I should make funeral arrangements. They diagnosed him with Prune Belly Syndrome (aka Eagle Barretts Syndrome, Triad Syndrome) His kidneys were shutting down and it did not look good. HE refused to give up and refused to stop fighting and he has been a fighter everyday since.
Kaden is now seven. He has gone through 19 surgeries and more hospital stays than I can keep up with. Kaden used to receive SSI for but because we have to work to support my other two children, he does not qualify for it and Kaden got kicked off Disability two years ago. It was not the check that I needed (considering for two years it was only $2) but the insurance was what I was needing and as long as Kaden qualified for SSI he received his Medicaid.
Kaden's condition has never stopped him. The disease affects your Urinary tract but there is not a whole lot of research done on the syndrome because it is so rare. (1 in 40,000 live births) The symptoms are so wide in variety for the syndrome that you never know exactly what will come up next. Currently, Kaden has grade 5 hydronephrosis on his left kidney (the worst) and grade 3 hydronephrosis on his right kidney. They removed half of his left ureter last year because it was dead and connected it to his right ureter. He had very little abdominal muscles as part of the syndrome, however he did have an abdominalplasty (tummy tuck) when he two where they pull muscles from his back over his intestines to help with sitting,walking, crawling, and yes even coughing. He has had an apendiovesicosmy, urostomy, vesicostomy, multiple nephrostomy tubes, stints in his kidneys/ureters/bladder, abdominalplasty,uretal tapering and reconstruction and those were just the main surgeries.
WHAT YOUR CONTRIBUTION DOES
Kaden has a PICC line in his arm due to pseudomonas continually growing in his kidneys. He also has a home health nurse and he requires self- catherizations through an ostomy site where his belly button used to be. I am trying to raise money to help cover his medical bills and medical supplies. Also, due to the multiple stays and surgeries, I have to take a lot of time off work, most of which is without pay. Unfortunately, doing the right thing and being there for my son doesn't pay the bills and keep his medical supplies coming.
He will have several more surgies in the future and I never want to be in a position that his health is at risk because I cannot come up with the money for his care.
Any contribution will go directly to Kaden's account where it will not be touched except for his medical issues.
Prune Belly Syndrome is a disease. It is a quiet disease and isn't talked about enough to be known but it is real. Even if you cannot contribute monetarily, spread the word. Let people know how serious this disease is. Word of mouth can spark interest in people and someone just may be able to find a cure one day and I would love nothing better than them to figure it out because of Kaden!!