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anencephaly, autonomy, beneficence, brain death, donation after circulatory declaration of death, justice, nonmaleficence, organ donation, personhood



  1. Stiekema, Jennifer L. DNP, CPNP-BC, MS, RN


Abstract: Anencephaly is a congenital defect in which the neural tube fails to fully close during the fourth week of embryonic development (Obeidi, Russell, Higgins, & O'Donoghue, 2010). The Medical Task Force on Anencephaly (1990) defined it as a condition with the following four characteristics: (a) A large portion of the skull is absent, (b) the scalp is absent over the skull defect, (c) the exposed tissue is hemorrhagic and fibrotic, and (d) the cerebral hemispheres are indistinguishable. Approximately one in every 4,647 births is affected by anencephaly, with an estimated 847 anencephalic infants born each year (Centers for Disease Control and Prevention, 2020). It is estimated that around 65% of anencephalic fetuses will die in utero, whereas those that survive to birth typically die within a few hours or days of life (Medical Task Force on Anencephaly, 1990). Anencephalic infants who do survive beyond birth often exhibit irregular breathing, requiring the use of mechanical ventilation to be kept alive. For decades, anencephalic infants have been the topic of a highly controversial and heated debate with regard to their status and potential as organ donors. Currently, anencephalic infants are not used as organ donors because they do not meet the criteria for brain death. To some, this seems like the elimination of a vital pool of organ donors, whereas others view this as preservation of the sanctity and dignity of human life. This highly disputed issue of anencephaly and how it relates to both brain death and organ donation is the topic of this discussion.