Two siblings, two debilitating diseasesand two heart transplants … in two months
John Johnston reports
As her family’s minivan motored along the highway, 7-year-old Zhania Coleman sat in the back seat happily recounting the five days she’d spent at summer camp.
But the girl’s emotions changed quickly that day, July 20, when her mother got a phone call from Cincinnati Children’s Hospital Medical Center. A donor heart had arrived; Zhania’s seven-month wait for a transplant was about to end.
Although great news – her survival depended on a new heart – it was also overwhelming and frightening. Zhania had a meltdown in the minivan. “She was hysterical,” her mother said.
The vehicle pulled over. Zion Coleman, who is 10, climbed into the back seat with his sister.
“It’s OK,” he told her. “I did it. You’re gonna be cool.”
If anyone is uniquely qualified to be a calming presence, it is Zion, who seven weeks earlier underwent a heart transplant at the same hospital.
So far in 2012, Cincinnati Children’s has performed 11 heart transplants, the most in any year since its first transplant in 1986.
The Coleman kids are unusual cases, not just because they’re siblings who received their hearts less than two months apart, but because it was the first time the hospital performed such transplants on children with sickle cell disease. Nationally, that scenario is “a rare event,” said Dr. Clifford Chin, medical director of pediatric heart transplant services at Cincinnati Children’s.
Zion and Zhania were preschoolers when diagnosed with sickle cell, an inherited blood disorder that causes red blood cells to take the shape of crescents, or sickles, and results in less oxygen being delivered to the body’s tissues.
They are the oldest of four children of Demetria and Nathaniel Coleman, of West Chester Township. He’s a restaurant cook, with health insurance that covers his family. She stays home to care for the kids. Their two youngest – Zareha, 5, and Zaire, 2 – have so far checked out as healthy.
Four years ago, at age 6, Zion got another diagnosis: a rare heart disease called restrictive cardiomyopathy. That also was Zhania’s diagnosis a year later, when she was 4.
The disease occurs in less than one child per million, according to the Pediatric Cardiomyopathy Registry.
Without transplant, prognosis grim
In children with the condition, the pumping chambers of the heart are abnormally stiff, restricting the heart’s ability to fill with blood, said Dr. Alistair Phillips, surgical director of pediatric heart transplantation at Cincinnati Children’s. As a result, the heart can’t supply enough blood to the body.
Without a transplant, about half of children die within two years of diagnosis, he said.
Zion was placed on the heart transplant list on May 13, 2010. Then he and his family waited.
He likes baseball, football and basketball, but he couldn’t play because he tired easily.
“When we went to Wal-Mart or Kroger, he wouldn’t be able to walk the whole store,” his mother said.
After two years, the call finally came on June 2.
Zion wasn’t nervous. Just the opposite.
“That’s cool,” he told his mother. “I get a new heart!”
Success hinges on teamwork
At the hospital, a team that included doctors, nurses, social workers, lab workers and a chaplain was ready.
“In general to do a heart transplant well, there’s probably about 100 people involved,” Phillips said. “When you add on top of it something like sickle cell, you’re bringing in a whole other group of people on top of this already complicated system.”
Just before the transplant, sickle cell patients require an exchange transfusion, “basically removing their own blood cells and replacing them with new blood cells to get their sickle cell percentage down, to make the (transplant) safe for them and to improve their recovery,” Phillips said.
Coordination is crucial, and the entire process “has to be done seamlessly,” said Phillips, who led the surgical teams for both children’s transplants.
Soon after the operation, Zion told the surgeon: “I had a party in my chest.” It was his way of saying he felt good.
He was discharged June 29, then the family checked into a nearby hotel so they could get to the hospital quickly if complications arose.
Comforting words from big brother
On July 20, the Colemans were returning to the hotel from Camp Joy, near Clarksville, where Zhania had attended a camp for kids with blood disorders.
That’s when the hospital called again, this time with news of a heart for Zhania.
As parents, “We couldn’t tell her it was going to be OK,” Demetria said. “That was (Zion’s) job.”
Big brother comforted her in the minivan. Then, at Zhania’s request, he accompanied her into the hospital.
“He sat next to her in bed and literally, step-by-step, broke (the operation) down for her. And when it was time for her to go (to surgery), she was so cool,” Demetria said.
Before being wheeled away, she said: “I can do this, Mom.”
Zhania was discharged from the hospital a week ago. She’s doing well, as is Zion, who is swimming and looking forward to swinging a bat next spring.
“I can’t wait to see him on the baseball field,” Demetria said.
The children are taking medications to prevent their bodies from rejecting the new hearts, and to prevent infections. With a weakened immune system, the children must avoid large groups for a year or so.
Other than that, they can be normal kids.
A family rejoices while others grieve
Like every transplant story, this one is bittersweet.
Somewhere, two families are grieving.
Demetria Coleman doesn’t know their identities. But she knows they bestowed on her children the greatest gift imaginable.
She’ll be able to send them letters. She said she’ll offer them the chance to meet Zion and Zhania: “If they want to wait years, whenever they’re ready, we’ll still be open to that.”
And she’ll try somehow to convey her gratefulness, but she acknowledges, “ ‘Thank you’ just doesn’t seem like enough.”
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