Hypoplastic left heart syndrome (HLHS) is one of the most complex congenital heart anomalies. Thirty years ago, it ws almost uniformly fatal. Since then, a staged reconstruction procedure has led to steadily improving survival rates. Babies with HLHS can also be treated with heart transplantation. Many pediatricians consider both the Norwood procedure (and its variants) and heart transplantation to be extraordinary care. In opinion polls, they say that, if they had a baby with HLHS, they might choose palliative care rather than surgical intervension. Many cardiac surgeons think that it is inappropriate to even offer palliative care for HLHS, since survival rates are now so good. We review this controversy, and present recent outcome data, in order to frame the ethics debate. We also discuss how the debate might change as fetal diagnosis of HLHS becomes more accurate and more widely available.

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