Camden Schwartz seems like a happy, energetic 5-year-old boy as he plays in his backyard, and gives his mom kisses after presenting her with a hand-drawn picture.
But he’s already endured more than 20 surgeries, including three open heart procedures. He will probably need another heart surgery sometime next year, says his mom, Elyse Schwartz. His parents and healthy twin brother, Nolan, travel to hospitals around the country to try to give him the best possible quality of life.
It wasn’t supposed to be this way.
Camden was born with half a heart because of a congenital defect that went undetected until he was 2 days old, just as he and Nolan were about to be sent home from the hospital. It was his pediatrician’s order for an echocardiogram that saved him.
Camden was rushed to a Broward County hospital, but Elyse had to remain at St. Mary’s Medical Center with Nolan because she had had a C-section.
The day after Camden had his first open heart surgery at 4 months old, he got the chicken pox from a hospital employee who had shingles, Elyse said. It caused a stroke that led to a host of other issues, including loss of blood flow to one lung. Camden was left with half a heart and one working lung.
“A couple years ago, we were told there was nothing else we could do for him and just enjoy him while we could,” Elyse said.
Instead, she and her husband, Eric Schwartz, enrolled their son in a clinical trial surgery at Boston Children’s Hospital, where his blood would be rerouted to his good lung. Camden is one of the hospital’s success stories. Eventually, he might still need a heart transplant.
His stroke damaged the right side of his brain, and he started having seizures around his first birthday. Medicine got the seizures under control, but the boy stopped drinking completely. He threw up the tube that went from his nose to his stomach so often that Elyse and Eric learned to reinsert it themselves.
They opted for another surgery to have a tube inserted through his abdomen to deliver food directly to his stomach. They learned insurance wouldn’t cover the surgery because Camden had already hit the $1.2 million cap to benefits for that year.
They decided to proceed with the surgery anyway and are still paying off the hospital bills.
Camden also has cerebral palsy, autism and weakness on his left side. Intense therapies have given him some independence and a sense of pride. Even with primary insurance through Eric’s work and secondary insurance through Sunshine Kids, the benefits only cover therapy for about a third of the year.
Camden’s prognosis isn’t fully known. Getting help from Season to Share will allow his parents to help improve his life.
When people ask them how they do it, the response is simple.
“We don’t have a choice. It’s really life or death for him,” Elyse said. “The alternative is not having Camden.”
Elyse and Eric Schwartz’s 5-year-old son, Camden, was born with half a heart. He contracted chicken pox when he got his first open heart surgery at 4 months old and then had a stroke that cut off blood flow to one of his lungs. He began having seizures around his first birthday, and the medicine that stopped them caused him to stop eating and drinking. He also has autism, cerebral palsy, weakness in his left side and no immune system. Behavioral therapy and TheraSuit therapy for his cerebral palsy, costly treatments not covered by insurance, would improve his quality of life.Camden would also benefit from a universal exercise unit and equipment for rehab/home therapy, special-needs swim lessons, an adaptable stroller, special-needs swing, physical therapeutic massages and hippotherapy. His family also could use help paying for a cardiac care checkup in Boston, as well as for steep medical bills not covered by insurance.
Photography by Greg Lovett/Staff
Nominated by Bella's Angels