Anencephalic Neonate – A potential organ donor?

Case: Angela and Bruce discovered from Angela’s high serum alpha-fetoprotein level that their child had a neural tube defect. Ultrasound confirmed a case of anencephaly. Three months later, baby Katherine beat the odds and was born alive, though with severe brain defects. She responded to external stimuli but had no sense of hunger, pain, or discomfort. She had an uncoordinated suck/swallow reflex that made breathing difficult when Angela tried to feed her.

The physician expected baby Katherine to die within hours or days. In the wake of their infant’s poor prognosis, the parents’ only wish was for her organs to be donated to another infant in need.

Background: The law states that organs can only be removed from a patient who is declared to be brain dead. For adult patients, a “brain dead” state is an irreversible absence of brain activity. “Brain dead” adults can be placed on a ventilator for their vital organs to remain well-conditioned until they are surgically removed. Anencephalic infants who survive birth currently do not meet the “brain dead” criteria, though they undoubtedly have an irreversible and deteriorating condition. As their brainstem slowly loses its primitive function, so do their organs, until the heart stops. While initially in good condition, their organs are generally not accepted for donation at the time “brain death” is declared.

Questions: Should Angela and Bruce have the authority to demand “premature” extraction of their infant’s organs? In this case, should an “absence” or severe underdevelopment of a brain be considered “brain death?”

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