It wasn’t supposed to happen again … and yet somehow, the same one-in-a-million illness seized two boys in the same family, years apart.
Restrictive cardiomyopathy is a serious heart disease that strikes fewer than one in a million children. Unfortunately for the Trice family of Mobile, Ala., their older son Troupe was on the wrong side of those odds, diagnosed with the condition in 2007 at just 3 years old. In and out of the hospital constantly, his health grew so grave that he was put on a heart transplant list. In July 2007, he got a new heart … but within a month, that heart failed. Troupe received a second transplant — this time, despite a number of complications, the heart took.
It was a great result for the Trice family, but Amelie, a registered nurse, told me that the transplants led to complicated feelings, as many transplants — at least ones involving deceased donors — tend to do.
“It’s a wonderful thing to get an organ that’s going to save your child’s life [but] it doesn’t come without its price,” she said. “There’s a lot of mixed feelings as far as you’re very happy to get this, but you know that your happiness is somebody else’s tragedy, in a way.”
Amelie said she wrote letters of gratitude to the families of both of Troupe’s heart donors but hasn’t heard back.
A few years later, with Troupe now thriving, his parents decided to have another child. In 2010, Troupe’s younger brother Henry was born. The boys’ mother Amelie told me that even though restrictive cardiomyopathy isn’t supposed to be genetic, she and her husband Stephen always worried “in the back of our minds,” that Henry, too, would be diagnosed with the disease.
Though Henry seemed a far healthier baby than Troupe, Amelie would ultimately learn that her fears were justified. As reported by Lagniappe, a weekly newspaper in Mobile, Ala., Troupe was diagnosed with restrictive cardiomyopathy after suffering an enduring respiratory infection at 18 months old. Soon, like his brother, Henry was placed on a list for transplant candidates.
When I spoke to Amelie on the phone last month, she said that there’s a suspicion now that there is a genetic component to their sons’ illnesses. At some point, she said, a geneticist might examine the boys’ cases. At the time, however, Amelie said their priority, not surprisingly, was just getting a new heart for Henry.
Days after we spoke, the Trice family “got the call” — a new heart had come through.
It’s now been about a week since Henry’s transplant operation at an Atlanta hospital and so far, so good. Recently, on her Facebook page, Amelie has been delighting friends and family with pictures of little Henry sitting up alertly in his hospital bed, coloring, and eating chocolate cake, one of his favorite treats.
As they concentrate on their younger son’s recovery, the Trices haven’t forgotten the family that made it possible. In a recent Facebook message, Amelie said she was praying for the family who donated a heart to Henry.
“(W)ithout their courage in a time of extreme grief,” she wrote, “we wouldn’t have this miracle.”
The Trices have endured significant financial hardships, including selling their home and moving in with relatives, to afford the costs associated with the boys’ transplants. To support the family, consider donating funds to the Trices through this page set up by the Children’s Organ Transplant Association.
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Photo courtesy The Trice Family.