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Published online by Cambridge University Press: 07 May 2010
Controversies sometimes exist about how to make good treatment decisions for infants and young children. For example, consider the following:
Case 1: Baby T was born at 32 weeks gestation and, as predicted in prenatal screening, had (non-mosaic) trisomy 13 and a semi-lobar holoprosencephaly as well as microencephaly. The only indication that she is conscious is that she reacts to painful stimuli by crying and withdrawing, and with an increased heart rate. Her teenage parents, however, are angry and distrustful. They do not believe the doctors, nurses, and members of the ethics committee who agree that when Baby T is conscious she is in considerable pain and that her life-prolonging treatments have no prospect of improving her condition but merely of prolonging her dying. Although carefully and compassionately counseled before and after Baby T's birth about her condition, her parents insist that they want “everything done” because they believe their daughter will be “perfectly normal.”
Holoprosencephaly is a disorder that arises from the failure of the embryonic forebrain to divide correctly. Consequently, the lobes of the cerebral hemisphere do not form properly. A spectrum of severity exists depending on the extent to which the lobes form, ranging from most severe to nearly normal. Those with the most severe form die at birth, and all are mentally retarded. Baby T has a severe case, but not as severe as that of children in whom a single-lobe brain structure exists.
Studies show that most adults would not want to prolong children's lives with maximal life-saving interventions if, like Baby T, they faced an existence of severe and intractable pain.
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