Background: Heart transplantation in children has revolutionized the care of young
patients with congenital and acquired heart disease, with considerable improvements in survival and
quality of life. Heart transplantation is now being offered as a potentially life-saving option to
pediatric patients with many cardiac conditions, and yet the major limiting factor remains the lack of
suitable donor hearts.
Requirement: Transplant teams and UNOS (the United Network for Organ Sharing) must attempt
the formidable task of balancing the needs of an individual patient with a responsibility to determine
the best use of a donor heart and promote equitable donor allocation. These issues become even more
salient when the transplant candidate is a child with intellectual disability (ID) or neurodevelopmental
delay (NDD). In this paper, we review the literature on the clinical practice and
ethical considerations surrounding heart transplantation in children, with a focus on those with ID or
NDD. We also review our experience at a major center for pediatric heart transplantation.
Keywords: Heart transplant, pediatrics, intellectual disability, neurodevelopmental delay, ethics, pediatric heart transplantation.
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