Abstract
Abstract: Advancements in surgical interventions, specifically the newer biventricular valve replacement, for babies born with hypoplastic left heart syndrome have increased the survival rate of this otherwise fatal congenital deformity. For those interested in surgical intervention, patients are lucky to have this option, although not all babies are candidates for this surgery. Survival rates must remain only a part of the conversation, as there are significant lifelong medical needs/risks for these babies, including neurologic and developmental disabilities. Medical factors are only part of the story. The out-of-pocket costs for this new procedure are very very high and can financially devastate families, who are frequently turning to crowdsourcing to cover their medical bills. Crowdsourcing to purchase medical procedures invites a host of ethical concerns to be discussed here. Finally, the inclusion of a pediatric palliative care team during these discussions will help parents and providers navigate these difficult and complicated conversations and decisions.