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 discussion with your child's medical team. A heart transplant can improve the quality of life for a child with end-stage heart failure, but there are many considerations, including the potential risks of a transplant and long-term side effects from immunosuppressants.
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: