A Controversial Clinical Case of a Child With Hypoplastic Left Heart Syndrome.

Abstract

We present the case of a child born with hypoplastic left heart syndrome. After developing multiple complications following the first surgical stage (Norwood procedure), her parents decide not to proceed with the second stage (Glenn operation). Cardiac surgeons, pediatric intensivists, a psychologist, and a bioethicist analyze whether further surgical intervention is ethically obligatory. A cardiac surgeon believes that after getting beyond the difficulties of the first stage, the patient seems to be a reasonable candidate for the next procedure. He considers the intervention to be ethically permissible edging on ethically obligatory. The psychologist describes the emotional impact of traumatic experiences like the one experienced by this family. She analyses whether their decision is likely to be aligned with their values and explains the possible mechanisms that justify a decision not to continue with surgery. Physicians, a surgeon, and a bioethicist analyze the parents' perception of excessive suffering based on severe complications that were far worse than expected. They believe that, even if proceding with the Glenn operation is in the child's best interest, state intervention to require the surgery over the parents' objection is not justified.