Ethical Challenges in Infant Heart Transplantation: A Clinical Case Presentation

At the time of diagnosis of the chromosomal deletion, there had been only 12 previously reported cases with the common findings of congenital heart disease, microcephaly, intrauterine growth retardation, mental retardation, and minor facial dysmorphism.1,2 None of the previously reported patients had cardiomyopathy. Because of the uncertain long-term outcome, the family was encouraged to pursue conservative management of K.R.’s heart failure rather than heart transplantation. Soon after birth, the infant was discharged from the hospital with outpatient follow-up. She began to experience episodes of limpness, pallor, and diaphoresis in which she became unresponsive; these incidents necessitated hospital readmission. K.R. failed to thrive on medical therapy. The parents read an article in a popular magazine about a successful heart transplantation in an infant at Loma Linda University Medical Center (LLUMC). They called LLUMC to inquire about heart transplantation for their daughter, who at this time was 2 months of age.