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.



Myriad treatments

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.



‘He’s first’

His parents, who are not married, say they have long relied on mutual respect, open communication and a shared desire to put Dylan first in order to get through each hurdle.

They alternate their 12-hour work schedules — Collins at Jasper Products and Waggoner at Gilster-Mary Lee Corp. — so that one of them always is off work to take care of Dylan, who has a bedroom in each of their homes.

“Neither one of us will let the other fall,” Waggoner said. “And when it comes to Dylan, he’s first. He’s my hero. He’s the toughest person I know.”

They have read, researched and committed to memory about as many medical terms as a medical student, and they have been open and honest with Dylan about all that is going on.

“You try to keep up; you don’t want to be in the dark about anything,” Waggoner said. “All you can bank on is doing your best to get through the next step.”

That next step, they said, will be a new heart.

“We’re just waiting on a phone call,” Collins said. “When it comes, we have four hours to get there. I have two charter flights arranged already on standby.”

Dylan’s B positive blood type and the fact that he must have a child’s heart — an adult heart would be too large — present medical challenges. Knowing that another child must die for Dylan to live presents emotional ones.

“It’s not the easiest to try to get in your head, to know I’m not going to have my own heart anymore,” Dylan said. “I’m going to have someone else’s.”

He stays optimistic, never complains, and is quick with a smile. He will turn 11 in October, and he just started his fifth-grade year at Webb City Middle School. He can attend only about a half day before he is worn out, but he dreams about the future.

“I want to be in the Army, but I couldn’t be on a battlefield,” he said. “But I have learned a lot of things about medical things. I’ve read Mom’s health transcription books, so maybe I could be some sort of health surgeon in the Army instead.”

He also is realistic about his chances at playing football. So his father offered up a solution.

“Learn to take good photographs, and you can be out on the field with a camera,” his father suggested. “Then you could be right there with the action.”



SUPPORT SNOWBALLS

Although his parents have had to take numerous days off work without pay in order to make the trips to Minnesota and bills are mounting, they are quick to assure Dylan that nothing they are facing is his fault and they are uncomfortable with the idea of accepting help.

But friends, family members, teachers and co-workers from Webb City and Joplin have rallied to show support.

Three teachers from Mark Twain Elementary School drove to the Mayo Clinic with gift baskets and spent time at Dylan’s bedside. With some arm twisting, longtime friend Wayne Medley, of Joplin, persuaded the parents to allow a benefit to be put on in Dylan’s name to help with expenses.

“Ronnie was reluctant to let me do a benefit,” Medley said. “They’re the type of people, they take care of their families, they don’t ask people for help. That’s just the way they were raised.”

Waggoner’s co-workers Debbie Robbins and April Bartholomew signed on to help, and musicians from LiveWire and the Beer and Chicken Band agreed to play.

“The community rallied around, and it started snowballing,” Medley said. “Everyone I’ve talked to has jumped on board. Family, friends, people who know people. It’s unbelievable.”

The event, slated for Sunday afternoon, will include hot food and cold drinks, musical performances, and a live auction.

The committee also established the Dylan Waggoner Benefit Fund at Arvest Bank. Medley’s great-grandson, Kainen Graham, a fifth-grader at Columbia Elementary School in Joplin, was the first to donate.

“He mowed lawns all summer, and he said he wanted to be the first one to donate, so he took in $30 of his yard money,” Medley said. “It about brought tears to my eyes.”

Waggoner said he “just didn’t realize how much people could care about a child.”

Medley said that in Dylan’s case, it’s easy.

“When you meet that boy, you cannot help but fall in love with him. He has a sweet personality, very intelligent,” he said. “They’re just great, great people. I feel honored they allowed me to do this.”



Time and place

THE DYLAN WAGGONER BENEFIT will be held from 1 to 5 p.m. Sunday at Joplin VFW Post No. 534 at North Main Street and Veterans Way.