In re Baby K.

Ms. H. (defendant) was pregnant with Baby K., and Baby K. was prenatally diagnosed as having anencephaly, a congenital defect involving inadequate development of the cerebral cortex. Anencephalic infants had brain stems, but the cortexes were underdeveloped or completely absent. There was no treatment or cure for anencephaly, and because most anencephalic infants died within days of birth, Ms. H. was counseled by doctors to terminate the pregnancy. Ms. H. refused on religious grounds and gave birth to Baby K. at a federally funded hospital (plaintiff). Baby K. was permanently unconscious, and her actions were limited to feeding reflexes and reflexive responses to sound and touch. Baby K. had extreme difficulty breathing and required frequent mechanical-ventilator care to breathe. The hospital recommended that Ms. H. allow a do-not-resuscitate (DNR) order for Baby K. because her condition was untreatable and because the ventilator care was medically unnecessary and inappropriate. Ms. H. refused and demanded continued ventilator care. After multiple months of care for Baby K., both at the hospital and an independent-care home, and multiple emergency hospitalizations for ventilator care, Ms. H. continued to refuse the DNR order because of her religious beliefs. The hospital brought an action in federal court under the Declaratory Judgment Act. The hospital sought declaratory judgment that withholding of Baby K.’s ventilator treatment because of her anencephaly would not violate the Emergency Medical Treatment and Active Labor Act, the Rehabilitation Act, or the Americans with Disabilities Act (ADA), among other state laws. The court declined to issue a ruling regarding the state laws but found that denying ventilator treatment would violate the Emergency Medical Treatment and Active Labor Act. The court then addressed the Rehabilitation Act and the ADA.