The case presents a teenage girl, Sam*, in the end stages of a rare disease, with no proven therapeutic options and an investigational hematopoietic stem cell transplant has been offered thr...

I had heard rumblings of the possibility of consult on this patient. As a pediatric intensivist conducting consults for my institution's clinical bioethics service, I had come to appreciate that many low‐ to moderate‐level ethical dilemmas are present in the pediatric intensive care unit (PICU) every single day. Despite this, or maybe because of it, it takes quite a morally complicated situation to trigger a consult for the service.Sam was a three‐month‐old who had been born full‐term without complications. In the (...) weeks prior to admission, his parents found that he was not feeding well and at times struggled to catch his breath. At our institution's PICU, it was determined that his decline was secondary to dilated cardiomyopathy, for which he would require cardiac transplantation for survival. Sam's parents were unsure if putting him through a heart transplant was the right thing to do, but they were unable to tolerate the thought of losing him. After an extensive consent process, they decided to pursue cardiac transplantation. (shrink)