Infant Doe was born with Down syndrome in Bloomington, Indiana, on April 9, 1982. He slowly starved to death as court after court, in a widely publicized process, turned down efforts to save his life. He died after six days even as attorneys were en route to file a petition with the United States Supreme Court.
In other words, Dr. Muraskas is saying that, yes, many of these babies will indeed survive, but will have disabilities. The assumption is evident: death is preferable to living with significant disability. This bias persists despite the fact that, as the study documented, providing active treatment earlier did yield dramatically less severe impairments.
For the past three decades, there has been controversy over cases in which children born with disabilities have been denied lifesaving medical treatment. The best-known instance is “Infant Doe.”
In March 1983, the Reagan Administration established a hotline to report cases of such denial, which it maintained would violate existing federal law prohibiting discrimination on the basis of handicap among recipients of federal funds, a position ultimately rejected by the U.S. Supreme Court in June 1986.
In the interim, Congress adopted the Child Abuse Amendments of 1984.
Under that law, which remains in effect, in order for a state to receive federal funding for its child abuse and neglect program, it must have in place and enforce procedures to prevent “withholding of medically indicated treatment from disabled infants with life-threatening conditions.” (The exact nature of “medically indicated treatment” is detailed in the statute and its implementing regulations.)
Thus, the denial-of-treatment practices in many hospitals are directly contrary to the protective provisions of federal law designed to prevent discriminatory denial of treatment based on present or projected disability.
The AP article closes:
Hospitals’ actions had “a dramatic influence” on how infants fared, Dr. Neil Marlow of University College London commented in the journal. Just giving parents survival statistics without saying whether treatment was attempted “is misleading and helps to make poor survival a self-fulfilling prophecy,” he wrote.
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