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.
Reducing donor acceptance practice variation – Learnings from a discussion forum Read More »
Patients with Fontan physiology may develop symptoms that require life-saving cardiac care such heart failure medicines, VAD support and/or transplantation. ACTION is working on timely referral for this cohort which is extremely important for optimal outcomes.
Fontan Referral for Advanced Care Read More »
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.
Preparing Patients for Transplant & Maximizing Donor Acceptance Read More »
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.
A New Heart, A New Community: Raylan’s Story Read More »
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.
Finding Light in the Dark: Brynn’s Story Read More »
“Learning networks in pediatric heart failure and transplantation” was published June 17, 2021 in Pediatric Transplantation. This ACTION publication defines “learning networks” and how they’re different from traditional clinical research
Learning networks in pediatric heart failure and transplantation Read More »
“Psychological Outcomes in pediatric patients with ventricular assist devices and their families: A systematic review” was published in Pediatric Transplantation on Mar 11, 2021. This systematic review of literature identified
Psychological Outcomes in Pediatric Patients with VADs and Their Families Read More »
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
A Novel Method of Donor‒Recipient Size Matching in Pediatric Heart Transplantation Read More »
Right heart failure (RHF) after LVAD implantation can negatively impact a child’s transplant candidacy and survival. Successful LVAD outcomes require anticipation, prevention, early identification, and management of RHF, but there
Right Heart Failure Considerations in Pediatric VADs Read More »
