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Updated: Jun 21, 2025
Implantation of Total Artificial Heart in Congenital Heart Disease
Published on: July 18, 2014
End-stage care for children after heart transplant
1Department of Pediatrics, Children's Hospital Colorado, University of Colorado, Aurora, CO, United States.
Insights
Pediatric heart transplant recipients can develop chronic cardiac dysfunction years later. This review addresses long-term care needs, emphasizing palliative care and ethics for better shared decision-making.
Area of Science:
- Pediatric Cardiology
- Transplant Medicine
- Palliative Care
Background:
- Over 600 pediatric heart transplants occur annually for life-limiting cardiac conditions.
- Pre-transplant discussions focus on waitlist and post-transplant outcomes.
- Limited resources exist for managing recurrent end-stage disease in long-term pediatric heart transplant survivors.
Purpose of the Study:
- To review the care of pediatric heart transplant recipients with chronic cardiac dysfunction years post-transplant.
- To highlight the need for improved provider education in palliative care and medical ethics.
- To enhance shared decision-making between medical teams, patients, and families.
Main Methods:
- Literature review focusing on long-term outcomes in pediatric heart transplantation.
- Analysis of challenges in managing recurrent cardiac dysfunction.
- Examination of ethical considerations in end-of-life and chronic care decisions.
Main Results:
- Chronic cardiac dysfunction is a significant concern in long-term pediatric heart transplant survivors.
- Existing care models often lack provisions for late-stage graft dysfunction.
- Palliative care and medical ethics are crucial for managing complex cases.
Conclusions:
- Pediatric heart transplant providers require specialized training in palliative care and medical ethics.
- Enhanced education can improve shared decision-making for patients with recurrent disease.
- A proactive approach to long-term care is essential for pediatric heart transplant recipients.
Abstract:
Heart transplant is performed annually in over 600 children worldwide to treat life-limiting cardiac disease. Conversations regarding waitlist mortality, post-transplant morbidity and mortality, and goals of care are commonplace pre-transplant. However, there is a void of information and resources for providers and families when end-stage disease recurs in the long-term transplant recipient. The purpose of this review is to discuss the care of the pediatric heart transplant recipient with chronic cardiac dysfunction occurring years after a successful transplant. This includes a need for transplant providers to have education and training related both to palliative care and medical ethics to improve shared decision making with patients and families.
