Deven Shelton is certainly not the only 2-year-old whose favorite food is Chef Boyardee ravioli, but until a few months ago, a special formula diet kept him alive, so solid foods have become a very big deal in his rapidly changing life.
On July 7, after being on the transplant list for only 12 hours, Deven received a new liver at SSM Cardinal Glennon Children’s Medical Center that cured his terminal condition, called ornithine transcarbamylase deficiency. OTC deficiency is a metabolic condition where the liver lacks an enzyme that breaks down protein and causes ammonia to accumulate in the blood in levels much higher than what is safe.
“The liver transplant was a cure,” says Jose Derdoy, MD, liver transplant director at Cardinal Glennon. “His brain will be safe now, and our hope is he can develop like any other child and live a normal life.”
Preparing for the Worst
When Deven was one week old, he went into a coma and was immediately admitted to the pediatric intensive care unit with renal failure and brain swelling. His parents were told to expect the worst – that Deven would not live more than 24 hours.
“They told us Deven would not survive, that there was a zero chance,” said Steve Shelton, Deven’s father. “We allowed ourselves to have a little bit of hope. But we didn’t want to get crushed.”
One day passed, and then another, and Deven held on to life. His medical team ran genetic tests and found the OTC deficiency. After that, Deven slowly recovered at home on a special formula diet, and was stable for a year until he was eligible to be placed on the liver transplant list.
At 20 months, Surgeon Harvey Solomon, MD, performed the transplant that saved Deven’s life.
“Since then, he’s just progressed so quickly,” said Erin Foristal, transplant nurse. “Kids are so fragile after a transplant, but everyone’s been amazed at how well he’s done.”
Deven is eating solid foods now, and sitting up on his own. Though he suffered minor delays in infancy from the high levels of ammonia in his system, his brain is regenerating now and helping him catch up with other children his age.
Dr. Derdoy said Deven’s parents have played a huge role in his successful recovery, keeping him on his special diet and helping him thrive post-transplant. However, they give equal credit to the medical team.
“This is an absolute miracle, and there aren’t words to express our gratitude to the transplant team here for giving us this little guy for the rest of his life,” said Mandy Shelton, Deven’s mom. “He wouldn’t be here if it wasn’t for all the people who believe in him.”
“He’s an absolutely new person,” Steve Shelton said.