Discussion: Born with Anencephaly

A baby is born with anencephaly, or absence of the entire brain above the brainstem. The brainstem is intact, which means that the baby can breathe and have a heart beat and blood pressure, but there is no chance for any human brain function or cognition, due to this birth defect. The health care team begins to educate the mother, since children with this deficit generally die shortly after birth. However, the mother is devoutly religious, and her minister has told her that if she prays hard enough to God, that God will work a miracle and her baby’s brain will heal itself. She is insistent that all possible care be given to her baby, including a months-long stay in the ICU, constant care by a caregiver, regular brain scans, and other expensive modalities. The hospital, finding her adamant, asks the court for guardianship of the baby, with the medical plan to provide only maintenance care with no life-prolonging techniques until the baby dies. What are the ethical issues at play here? How do the principles of autonomy, beneficence, nonmalfeasance, and justice manifest themselves? If you were called as an ethical consultant, what would you do/recommend?

 

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