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A congenital heart disease is said intractable when the only options are either heart transplantation or a complex palliative programme including several interventions leading to a mid-term Fontan-type circulation. The latter uses the single ventricle as a systemic one while the pulmonary circuit is a non-pulsed one which by-passes the absent right ventricle through a cavo-pulmonary anastomosis. Both of these are difficult to operate and have hazardous long term results. This is why prenatal detection of such lesions usually leads to termination of pregnancy. Yet, postnatally, a serious ethical issue emerges, opposing the above-mentioned options to a third way: abstention. Information delivered to the parents plays here a crucial role in decision making and everybody agrees for the need of the greatest objectivity. But to achieve such a wish is terribly challenging since many socio-cultural factors may puzzle the way to deliver and to receive the main messages. This can easily be demonstrated by the well-known instance of hypoplastic left heart syndrome. |
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