The family of 15-year-old Trevor Sullivan learned last February that their son, a football player and Boy Scout, needed a new heart to live. Now, almost a year later, a video of Trevor waking up after receiving that heart in a lifesaving surgery on Nov. 11 is going viral.
It isn’t because he’s loopy from the anesthetics. The words he speaks aren’t goofy or even funny. Trevor is overjoyed to be alive, a sentiment that brings both him and his father, Philip, as well as millions of other viewers, to tears.
“I’m so happy,” the Michigan teen says through tears on the video Philip Sullivan posted to Gift of Life Michigan’s Facebook page. “I can breathe again. I can talk.” In the background, his father agrees, voice shaking:
That video, which has been viewed by over 1 million people at last count, serves as a reminder that life is tenuous, even the life of a child. But Trevor hopes it will serve as something else: a testament to the lifesaving role of organ and tissue donors, something the Sullivans hope more people will sign up to be.
Trevor’s condition, cardiomyopathy, is one of those illnesses that just doesn’t make any sense. The word itself just means “weak heart,” and it encompasses a whole slew of screwy heart issues: thickened heart muscles, weakened heart muscles, enlarged ones — the list goes on and on, branching off into any number of genetic or environmentally caused types and subtypes. What makes a pediatric diagnosis of cardiomyopathy feel so much like a one-way ticket to Rip-off City is that you often can’t see it coming.
In children under the age of 18, a diagnosis in infancy is incredibly rare. It represents a fraction of the 1 in 100,000 kids who will be diagnosed with the condition each year, which means that most patients, like Trevor, will be born with a heart that is healthy and functioning as it should. Until the day it doesn’t.
For Trevor, that day came on Feb. 13 of last year, when he had to be airlifted to C.S. Mott Children’s Hospital in Ann Arbor. As if the diagnosis weren’t scary enough, it was soon followed up with another shock: He would need a transplant, and in the meantime, all the Sullivans could do was wait for a donor.
In 2010, over 100 kids died waiting for a lifesaving organ transplant. What makes treating cardiomyopathy with a surgical transplant especially difficult is that because child donor hearts are so rare, physicians must make a judgment call in wait-listing patients. If the patient’s heart might improve, listing them could mean more wait time for other patients. Waiting too long to list could end in tragedy. In Trevor’s case, he was wait-listed almost immediately, his heart issues so severe that doctors did not feel he could be safely discharged.
Still, they imagined that the wait for a donor heart would be somewhere between three and six months, right in line with the average wait time across all donor heart recipients, which is four months. Instead, it took eight months, every moment of which was agony for his family.
It’s part of the reason his parents chose to share the video and their son’s story on a GoFundMe page set up to defray the astronomical costs this terrible chapter in the family’s life has incurred. They want people to understand how important it is to give the lifesaving gift of an organ or tissues.
Trevor’s donor was young, and that’s all the family knows about the person who gave their child a second chance at life. What they do know is that the gift saved their son, something for which they will be forever grateful.
His mother, Kimberly, spoke to the media about watching her son wake up with a new heart after months of worry and fear, saying, “It felt like it was better than the day he was born.” It’s a powerful statement and one that reminds us that there is no guarantee in regard to how long we’ll have our children and that you can do “everything right” and still end up fighting for your child’s life. It definitely puts petty squabbles about everyday headaches into sharp perspective.
In regard to the viewers of his video, Trevor has something to say, according to ABC: “I wish everyone in the world can see it, because it really makes a difference. It promotes organ donation, and people can see the outcome of it and how happy they really are.”
To the donor who gave Trevor a new lease on life, his dad had something to say as well.
“Thank you for saving my kid.”