Bioethics Blogs

Not-so-lethal – the ethics and costs of extraordinary fetal intervention

By Dominic Wilkinson (@Neonatal Ethics)

Late last month, a paper in the US journal Obstetrics and Gynecology reported the extraordinary case of Abigail Beutler. Abigail is now 14 months old. She was born without kidneys, a condition sometimes called ‘Potter’s syndrome’. Potter’s syndrome is normally universally fatal in the newborn period, because without kidneys the fetus does not produce urine and has little or no fluid around them. Without any fluid around the fetus, their lungs do not develop.

Abigail is the first baby to ever survive with this condition. Doctors infused artificial fluid into the uterus around her (amnioinfusion) on five occasions during the pregnancy. This seemed to allow her lungs to grow. Although she was born 3 months prematurely, she had only minor breathing problems at birth. She has received kidney dialysis since soon after birth, was discharged home after 19 weeks and is now reportedly being considered for a kidney transplant. There are a number of issues raised by Abigail’s case.

First, this case represents the ultimate challenge to the concept of a ‘lethal congenital malformation’. Some birth defects are so severe that doctors refer to them as ‘lethal’. The implication is that the baby will inevitably die despite treatment. However, long-term survival had been described in almost all of the conditions that are commonly referred to as ‘lethal’, for example Trisomy 13, trisomy 18, anencephaly, suggesting that this terminology was misleading. The only exception to this used to be Potter’s syndrome, where survival had never been reported.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.