When David Hodges was born in August of 2000, doctors told his family members he wasn’t likely to survive.
The lifelong Ramsey resident was born with Eagle-Barrett, or “Prune Belly” Syndrome, a condition that affected his entire urinary tract. David was born with no urethra, one kidney that didn’t work, and another kidney that was only working at 40% of the capacity it should have been.
Family members say David, who was born at only 28 weeks, likely suffered the condition because of a lack of pre-natal care during his mother’s pregnancy.
At six months old, David went into acute kidney failure and needed a kidney transplant. When both of his parents refused to donate to their son, David’s grandmother stepped in.
Carol Hodges had no blood relation to her grandson. She and her partner Marge Janitschek had adopted their son in the 1970’s.
“I was working as a social worker and I took David’s father out of a really bad situation when he was [5 years old],” she said.
“The chances that I was a match to David and could be a kidney donor for him were one in 300,000,” she said. “But I was a match. And then, there was no thinking about it.”
David underwent a successful kidney transplant in December of 2001, and he returned home with Carol and Marge that Christmas.
Things were looking up, until David developed a cist behind his other, non-functioning kidney. After going to the hospital to get it removed, David contracted pneumonia. His body crashed, he stopped breathing, and his body rejected the new kidney.
“David’s been living in rejection since he was 18 months old,” Carol said.
Because of complications from his condition and system collapse at the hospital, David has undergone over a dozen surgeries, but he hasn’t let it hold him back.
Now, David is anxiously awaiting the celebration of his 13th birthday. He lives with Carol and Marge in Ramsey, attends Smith School where he is a rising seventh grader, is a car enthusiast who likes to hang out at local dealerships (where he hopes one day to get an after school job), and enjoys riding his bike, and spending time with his friends, neighbors, and family.
“They said I wouldn’t be able to walk, and I walk,” David said of his childhood doctors. “They said I wouldn’t be able to ride a bike, and I ride a bike.”
But, what David wants for his birthday is not a new toy car or bike. He needs a new kidney.
David’s creatinine levels indicate that he will soon need to go on dialysis if he does not find a matching donor.
“I am not going to go on dialysis,” David said confidently. “I am going to find a match and get a new kidney.”
The family is keeping positive, despite mounting obstacles. David is on 15 medications a day, has a nurse who comes to treat him at home each night, and has an increasingly restricted diet.
The family is being proactive – Marge has already been tested and is not a match. Carol and Marge have several family members and friends who plan on getting tested to see if they are a match and can donate to David, and they are asking the community for help.
Friends have created a Facebook page to create awareness, and the family is asking locals to get tested to see if they might be a match for David.
“Ramsey has been amazing to us,” Carol said. “We’ve met so many wonderful people, and it’s all because of David. He’s not afraid to go up to people and start talking. Everybody knows him. They’ll come up to me and say, ‘Oh, you’re David’s mom! I know him.’”
Now, the family is asking for potential kidney donors in the community to get tested to see if they are matches.
“I’d give him my other kidney in a heartbeat if I could,” Carol said. “It’s been really difficult over the years, watching him go through this. It’s been emotional for me, because the kidney I gave him was supposed to last 20 years. I thought the surgery would be something he didn’t even remember, not something he’d have to live with everyday like this.”
But, David keeps that family from getting too upset while searching for his match.
“I tell my mom all the time, there are people who have cancer and who are dying. I’m lucky, it could be a lot worse,” he said.
David, Carol, and Marge are confident they will find the right donor.
“He’s got a lot more living to do,” Carol said. “We have faith.”
Anyone interested in finding out more about kidney donation for David is asked to call St. Barnabas Medical Center at 973-322-5938, or 973-322-5047.