COLUMBUS, Ohio – Ten-month-old Julian Couch has spent every day of his life in a hospital.
His birth in Cincinnati went easily, but things soon changed, according to his parents, Tyler and Melanie.
Twenty minutes after birth, Julian stopped breathing. Doctors put him on a ventilator and transferred him to the neonatal intensive care unit, but Julian never got better. Test after test, everything was negative.
“They had no answers at all,” Melanie said.
Finally a diagnosis. Julian had a rare surfactant protein deficiency that kept his lungs — the size of butterfly wings — from inflating.
“He has a specific protein that his lungs are not able to make, and so this particular protein stabilizes the air sacs, and without that stabilization, his lungs don’t work well and so he can’t breathe on his own,” said Dr. Don Hayes, the medical director for heart and lung transplants at Nationwide Children’s Hospital.
“I’d never heard of that disease before. Most of the nurses had to be given paperwork of information on it,” Melanie said.
The couple moved to Columbus because of the successes doctors at Nationwide Children’s Hospital have had doing transplants on small children.
The two gave up their jobs in Cincinnati to wait for a heart and lungs.
Julian’s organs are so tiny that Hayes wants to transplant the lungs and heart together. But he says transplants in babies are rare.
“We need more organs available for all age groups, specifically even more so in infants and younger children because they’re few and far between,” he said.
Doctors at Children’s did a heart double-lung transplant in 2006.
It was a rare version called a domino transplant, when a set of heart and lungs the right size and blood type became available out of state, docs implanted them in Jason Wolfe.
His lungs were dying, but his heart, which was fine, went to Kayla Richardson, whose heart was dying.
Kayla’s father Rob remembers the wait for a new organ.
“Trying to hope for the best but preparing for the worst at the same time,” he says. “It was scary, but they let us know it was the best option at the time.”
Kayla is now an exuberant 7 year old, who grabs a Barbie doll and dances it into a large dollhouse.
“Dinner’s ready,” she shouts with a grin.
Then Kayla drops the doll, leaps on her bed, bounces across it, and disappears into her closet, in search of another toy.
“I had hoped that she would be able to go to school and live a normal life like a normal child, and so far, gratefully, she has been able to for the most part,” her father said.
Kayla’s mother, Rebecca Lovins, agrees.
“I love her personality and how she doesn’t take anything for granted, and she’s happy to see people,” she said.
Kayla takes medicine each day to keep her body from rejecting the donated heart, and has it tested several times a year. Her parents say she is doing extremely well.
“I was so amazed that technology could bring this all together and create a good ending,” says Lovins.
A good ending is what Melanie and Tyler want for their son, too. Melanie shares her dream.
“Just for him to have a chance to be a typical child. Run and play and have fun. Go to school.”
Then she leans over the crib and strokes Julian’s tiny arm. “I love you,” she croons. “I love you.”
Hayes said that only about half of all children who get a lung transplant are alive five years after surgery.
Sadly, little Jason Wolfe didn’t make it that long.
He passed away in 2007 when he was 21 months old.
Melanie Couch says she knows the odds, but she hopes her son can beat them.