WEBB CITY, Mo. —
The night Dylan Waggoner was born at Freeman Hospital West in Joplin, his mother and father couldn’t wait to see him.
But the medical staff took him away. Something was wrong.
“I kept calling, and they wouldn’t bring him,” said Ronnie Waggoner, his father. “Finally they came and got us, had us suit up to go in there.
“I remember walking by this little bed, and there was a little baby with oxygen on his nose and a hood, a bucket, of oxygen over his head. I said, ‘Oh, man, look at that poor little baby.’ And they said, ‘That’s Dylan.’”
The diagnosis: Ebstein’s anomaly, a very rare congenital heart defect that occurs just once per 200,000 live births and accounts for less than 1 percent of all cases of congenital heart disease.
In the human heart, the tricuspid valve separates the right atrium (the chamber that receives blood from the body) from the right ventricle (the chamber that pumps blood to the lungs).
But Dylan’s valve is so enlarged and deformed that it will not allow blood to flow easily in the normal direction, explained his mother, Heather Collins. As a result, Dylan has much lower oxygen levels in his blood.
And so Dylan, as an infant, was blue.
He immediately was airlifted to St. Louis Children’s Hospital; his parents had to follow by car.
“It was very scary,” his father said. “The head of the NICU (neonatal intensive care unit at Freeman) didn’t know what he was looking at. He’d never seen anything like it.”
Physicians kept the infant in St. Louis for five days — and Dylan didn’t wake up for the first two.
That was October 2001. In the years that followed, the boy and his parents would make numerous trips to pediatric cardiologist Allan Shapiro in Springfield for further testing and medications. By 2009, they would begin trips to the Mayo Clinic in Rochester, Minn.
“Dylan was getting bluer,” his mother said.
They made trip after trip to the noted medical center, where by 2011, the boy was well-known to nurses and physicians.
At age 8, Dylan underwent his first open-heart surgery to replace his tricuspid valve with a valve from a pig, which is most similar to the human heart. Within six months, it had deteriorated.
“He had purple fingernails, and his lips would get blue,” his mother said.
This summer, his health further deteriorated. He experienced severe migraines, his lungs collapsed, and his liver and kidneys began to shut down. He was airlifted to the Mayo Clinic with his mother, while his father drove what he described as the longest trip of his life.
An experimental new procedure using a human pulmonary valve replacement did not work. Dylan’s body rejected it.
“It was a roller coaster,” said Dylan’s father. “The meds to save him weren’t working.”
Neither was a ventricular assist device that is designed to provide short-term support for children whose hearts are too damaged to provide enough blood flow. Twice, Dylan clotted the machine, and twice it was replaced.
“His body just kept throwing curveballs,” his father said.
They spent six weeks at the medical center. Joseph Dearani, one of the top pediatric surgeons in the world, was upfront with Waggoner and Collins about Dylan’s chances: He needed a heart transplant, and soon.
“The bottom dropped out,” his father said.