An upside-down Dylan and brother Derrick horse around with dad in the family’s living room.
On a sunny day in Tracy, Calif., on the northern edge of the San Joaquin Valley, Dylan Dunniway, 4, bounces around like a wound-up pogo stick. You'd never guess he's survived four open-heart surgeries.
Nearly four years ago, when Jim and Melanie Dunniway first brought Dylan to Children's Hospital & Research Center Oakland, he was a pale emaciated 5-month-old. He hardly smiled and didn't have enough energy to suck on a bottle.
Cardiologist Gregg Helton, MD, knew immediately Dylan was a "cardiac baby." An echocardiogram soon provided a clear picture: When Dylan was born his heart had only one ventricle, instead of the normal two.
Because his heart lacked a right ventricle, it was working twice as hard. Even so, Dylan's body was oxygen-starved. Technically, he had been in heart failure since birth.
"It takes you out from the knees," Jim said about the diagnosis. "Your whole life as you know it comes to a complete stop and everything you thought was important becomes so non-important."
"I knew from that day on," Melanie adds, "that there was going to be a lot of hospital stays and surgeries, that this was the kind of life it was going to be with Dylan."
What she didn't know was how Children's caregivers and her Tracy community would rise to the occasion to help her son and family.
A few days after the diagnosis, Dylan underwent the first of four major open-heart surgeries (plus 10 lesser procedures).
The series of surgeries created what's known as a Fontan Circulation. Named after Francis Fontan, MD, who first performed the procedures in 1968, the Fontan rerouted some of Dylan's blood so his heart can function efficiently with only its left-side chambers.
In a normal heart, the right chambers pump low-oxygen 'blue' blood to the lungs, where it picks up oxygen and returns to the heart as oxygen-rich 'red' blood. The red blood is then pumped out of the left heart chambers to the body. Blue blood and red blood normally never mix. But in Dylan's heart, red and blue blood was mixing in the left chambers. His body wasn't getting enough oxygen-rich red blood.
The goal of the surgeries: To separate red blood from blue, so only oxygen-rich red blood would be pumped through his heart to his body. Blue blood would be sent directly to the lungs.
Because of the malformations in Dylan's heart, too much blood was going into his lungs, causing them to bulge out his chest. During the first operation surgeons placed a restrictive band on a lung artery, reducing the flow there and redirecting it to the body. They also repaired a valve. This helped Dylan's plum-sized heart pump more oxygen to his body.
Four months later, Dylan went through a second surgery to connect one of his veins directly to the lung artery. Surgeons also spliced two arteries together.
Eight months after that, a third surgery made sure all the blue blood coming from his upper body was sent directly to his lungs.
Doing the same for his lower body required a fourth operation. Doctors intended to install a permanent Gore-Tex tube to connect a vein to an artery. To make sure Dylan's heart would be large enough not to outgrow the tube, doctors decided to wait till Dylan weighed 30 pounds.
But Dylan had trouble gaining weight, it took too much energy to chew and swallow. "Eating becomes like an athletic event for medically fragile infants," said Elizabeth Gleghorn, MD, a Children's gastroenterologist. "It's very strenuous."
To help him gain weight, Dr. Gleghorn inserted a gastrostomy tube (g-tube) into Dylan's stomach. Children's clinical nutritionist Gail Seche prescribed a specially balanced feeding solution to be dripped in five times a day.
When Dylan reached 30 pounds in March 2005, doctors performed the fourth surgery. It went well and soon Dylan was on the road to recovery.
Today, Dylan's blood oxygen level is normal and his complexion is healthy. He's as feisty and frisky as any kid his age. He doesn't have to stop and rest while his friends and neighbors keep playing.
Jim, Dylan's dad, is a sports lover and gamesman; he understands that contact sports aren't in Dylan's future. But he's already prepping him for golf and billiards (a table fills the family's foyer), and another of Jim's favorite's, poker.
Melanie, his mom, frets about sending him off to school one day and wonders if she'll be able to let him go. "Do I volunteer all day at his school?" she said. A couple of years ago, they weren't sure they'd have this problem.
"Every day, I wake up and I walk into his room. I love to see his breathing," said Jim. "Believe me, I don't take it for granted."