Dylan, upside down, horsing around with dad Jim and brother Derrick.
A pensive Dylan gets x-rayed.
On a sunny spring day in Tracy, Calif., on the northern edge of the San Joaquin Valley, Dylan, almost 4, bounces around like a wound-up pogo stick. He jumps into a motorized cart, and he and brother Derrick, 5, tool around the cul-de-sac in matching carts in front of their house. When he’s had enough, Dylan rousts about the family’s garage and tries to copy Derrick by dribbling a basketball. When he’s bored with that, he gets his mom to blow bubbles. He catches some and karate-kicks others. This amuses him to no end and he goes on and on. You’d never guess Dylan has four open-heart surgeries under his belt.
When Jim and Melanie Dunniway first took their son to Children’s Hospital & Research Center Oakland, Dylan 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: Dylan’s heart had a single ventricle anomaly; he was born with a left ventricle only. Because his heart lacked a right ventricle, it was working twice as hard and Dylan’s body was oxygen-starved. Technically, he had been in heart failure since birth.
“It takes you out from the knees,” Jim says 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 her caregivers at Children’s and her own community of Tracy would rise to the occasion to help her son and family get through.
A few days after that visit to Children’s, little Dylan underwent the first of four major open-heart surgeries (plus ten lesser procedures). The series of surgeries creates what’s known as a Fontan Circulation, after Francis Fontan, MD, who first performed the procedures in 1968. The Fontan is designed to reroute some of Dylan’s blood so his heart can function efficiently with its left chambers alone.
‘blue’ blood to the lungs, where it picks up oxygen and returns to the heart as oxygen-rich ‘red’ blood, which is then pumped out of the left heart chambers to the body. The blue blood and red blood remain separate. In Dylan’s heart, all the blood, red and blue, was mixing in the left chambers. This didn’t allow his body to get enough
oxygen-rich red blood.
The goal of the surgeries was to separate the red and blue blood streams. After the surgeries only oxygen-rich red blood would be pumped through his heart. The blue blood would bypass the heart and be sent directly to the lungs.
The first operation helped Dylan’s plum-sized heart pump more oxygen to his body. Because of the malformations, too much blood was pumping into his lungs. His lungs had expanded to accommodate, leaving a bulge in his chest. Surgeons placed a restrictuve band on a lung artery, reducing the flow there and redirecting it to the body. They also repaired a valve. For the first time, Dylan was a smiley baby.
A scant four months later, Dylan underwent a second open-heart surgery and eight months after that a third. Doctors took one of his veins and connected it directly to the lung artery, then spliced two arteries together. After the third surgery, all the blue blood coming from his upper body was sent directly to the lungs. Doing the same for the lower body blood stream required one last operation.
Before that fourth surgery, Dylan needed to reach 30 pounds in weight. A permanent Gore-Tex tube would be used to connect a vein to an artery; his heart needed to be large enough so it wouldn’t outgrow the tube.
Gaining weight wasn’t easy for Dylan. As an infant, he hardly ate. It took too much energy to chew and swallow.
“Eating becomes like an athletic event for medically fragile infants,” says Elizabeth Gleghorn, MD, a gastroenterologist at Children’s. “It’s very strenuous. Unless you eat, you don’t develop the instinct for it,” she explains.
To get Dylan enough nourishment, Dr. Gleghorn inserted a gastrostomy tube (g-tube) into his stomach. Children’s clinical nutritionist Gail Seche prescribed a specially balanced feeding solution to be dripped in five times a day. By March 2005, he weighed the necessary 30 pounds.
Feisty and frisky
Dylan made it through his surgeries like a champion. Today, his blood oxygen level is normal and his complexion is healthy. He’s as feisty and frisky as any 3-year-old and doesn’t have to stop and rest while his friends and neighbors keep playing. Often, it's them that can't keep up with him.
Dad, a sports lover and gamesman, 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 games, poker.
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 asks. 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. Believe me, I don’t take it for granted,” says Jim.