Since cardiomyopathy can be a progressive condition, the heart may deteriorate to the point where medication, mechanical treatments, and surgical interventions are no longer effective. When a child no longer responds to available treatments but persists with symptoms of heart failure or suffers severe disability, a heart transplant may be recommended as a procedure of last resort.
The decision to have a heart transplant requires much thought and expert medical consultation. Transplantation can provide an improved quality of life with children with end-stage heart failure, but it is important to understand that it is not a cure for cardiomyopathy. While a heart transplant may remove the diseased heart and eliminate the symptoms of heart failure, there is the possibility of infection, organ rejection, coronary artery disease, and side effects from daily medications.
If it has been decided to list your child for a heart transplant, a multidisciplinary team of medical and healthcare professionals will be assigned to work with your family. The process to receive a donor heart is involved, and it can be an emotional journey. The different stages can vary in duration and include:
- Post-transplant recovery
Support and Resources
Finding relevant information and support can help you through the transplantation process. CCF has partnered with the Pediatric Heart Transplant Foundation to develop a guidebook, Pediatric Heart Transplants: A Guide for Patients and Families that details the entire heart transplant process from assessment and listing to surgery and post-transplant care. To view the guidebook, visit our Educational Materials page.
Parents seeking to connect with other heart transplant families have the option of being matched one-on-one with another parent or they may join CCF Connect and utilize the discussion forum to communicate with other heart transplant families.
Other helpful resources include: