On any given day, you may find Riley watching live sports in his home state of Montana. You may not know that Riley has been living with Duchenne Muscular Dystrophy since he was 3 years old. With his family’s fierce support, he’s lived wholeheartedly despite the challenges of his condition. From intensive heart transplant surgery to obtaining a college degree, Riley follows his mother Nina’s advice: that a “life is meant to be lived.”
Although waitlist mortality is unacceptably high, nearly half of donor heart offers are rejected by pediatric heart transplant centers. ACTION and PHTS convened a multi-institutional donor decision discussion forum (DDDF) aimed at assessing donor acceptance practices and reducing practice variation.
Transplant outcomes are improved if patients are strong going into the surgery. We have many projects focused on the right time for transplantation. Donor availability is an ACTION priority and can be improved by sharing experiences on donor acceptance and perfecting best donor recipient size match.
From the moment Raylan was born, he fought for his life. Born with cardiomyopathy, Raylan was placed on the transplant list at seven weeks old. His parents, Bonnie and Craig, could only sit and wait for answers about their baby. After agonizing challenges, numerous roadblocks, and more than a few long nights, Bonnie and Craig brought their baby home and found a new community along the way.
One weekend, Jimmie noticed his 16-month-old daughter, Brynn, was breathing strangely. One week later, Brynn was heading into surgery to be placed on a VAD. For half a year, Jimmie and his wife, Kristyn, waited by the phone for the transplant call. The family had many long nights, learned how to navigate their lives with a VAD, and finally reached the end of a dark tunnel.
Did you know the second most common reason for refusal of donor hearts in pediatric heart transplantation is donor size mismatch? Donor-to-recipient size matching is almost exclusively weight-based, but there …