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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. No longer.

Second, this case report is likely to lead to very challenging conversations and discussions with families whose fetus has been diagnosed with a similar condition to Abigail’s. The main difficulty is that it is impossible to know how likely it is for any future cases that they would have as good an outcome as Abigail. Amnioinfusion is not a new treatment. It has been used for some time in other situations where there is very little fluid around the fetus (usually where the mother’s waters have broken early). A Cochrane review performed in 2013 found no randomized trials. An earlier review by NICE found a number of reports of the procedure, but no clear evidence that it improved the outcome for babies. One problem is that the amnioinfusion procedure may cause miscarriage or premature labour. It may well be that doctors have tried amnioinfusion in other cases of Potter’s syndrome, but have not reported the results because the treatment was not successful.

Third, in-utero treatment of conditions like Potter’s syndrome raise questions about the costs of treatment. Although amnioinfusion itself is not terribly expensive, if it proves successful, any surviving infants will need long-term dialysis and kidney transplantation. It is very difficult to know what the actual costs of this treatment would be, but reports from the United States and Italy suggest that they are substantial. Infants often require repeated hospitalization. How should the costs of this treatment be compared with other life-saving treatment? For example, it is highly likely that the average yearly cost of chronic dialysis, hospitalization and transplant for a newborn infant exceeds 30,000 pounds per year. In public health systems like the NHS, treatments costing that much are usually not funded. Should there be an explicit decision not to offer this treatment in the UK?

Furthermore, does the fact that the recipient of treatment (at least at the start) is a fetus, have any implications for how we think about the costs of treatment? Say, for example, we had to decide between multiple different treatments that had a similar cost per year of life saved. Should we give priority to saving the life of a child or an adult over a fetus?

Finally, Abigail’s case provides an interesting example of the interplay between politics and ethics, particularly in North America. Abigail’s mother is a Republican senator, who has opposed Obama’s Affordable Care Act. Clearly she has very personal (and understandable) reasons for wanting to resist health-care rationing. However, other US women, uninsured, or with insurance that would not cover this sort of treatment, will never be offered amnioinfusion.


Image: wikimedia commons


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1 Comment on this post

  1. This is a very interesting case study and raises a very uncomfortable debate over resources- should we attempt to save a life which is knowingly going to be a drain on resources? How does a doctor tell parents “sorry it is not cost effective for us to attempt to save your fetus”?

    In relation to the choice of saving a child/adult life over that of a fetus, I personally would want the focus to be on the life already in existence. There is a greater sense of loss for a living person as they have a “life”, i.e family, work, experiences etc and would be aware of this loss. The parents of the fetus may, for obvious reasons, argue that the life of their unborn child is just as valuable. Again, this leads on to a further debate about the emotional development of an fetus.

    Although the parents would feel a great loss would the fetus suffer any loss themselves? Answers to this question will vary among many different people but everyone can agree that a child or adult will be aware of the loss of their own life and because of this resources should be focused on those already living.*

    *I make this statement in specific relation to the diagnosis of “lethal” diseases which will inevitably be a large drain on resources should the fetus survive.

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