A momentous investigation into complaints alleging that (USA) disabled citizens were discriminated against and denied equal protection (including being deprived of medical help), was completed and released under the title of Medical Discrimination Against Children with Disabilities. One compelling case included in this report, bears a striking resemblance to baby Maartje. It involved a infant known as `Baby Jane Doe, whose future, if she survived surgery, was "unremittingly bleak". (14)
Baby Jane Doe's parents engaged in one of the most highly publicized litigated cases concerning a disabled infant. Upon advise from the infant's physicians, the parents decided not to have life- saving surgery done on the infant and the case went to trial. Baby Jane Doe was diagnosed with "spina bifida", having "fluid on the brain" [hydrocephalus]; "an abnormally small brain"; and was "so severely deformed that there is nothing that can be done for her." (15) Dr. George Newman, a pediatric neurologist, told the court that:
she is not likely to ever achieve any meaningful interaction with her environment, nor ever achieve any interpersonal relationships....develop any cognitive skills... whatsoever. (16)
The Los Angeles Times reported that "Doctors say that without surgery the girl may live up to two years; with it she could live until she is 40 but she would be severely retarded, epileptic and paralyzed from the waist down, as well as in constant pain"." (17) American bioethicist Arthur Caplan, also questioned the `quality of life' of Baby Jane Doe. In his article, "Is it a Life?", Caplan said:
No one should be forced by the government, [or] civil libertarians ... to live such a life, even briefly.(18) The court ruled in favor of the parents, and surgery was denied. An appeal was launched and a guardian ad litem was appointed. At conclusion, "the trial court judge ruled...It is clear...that the infant is in imminent danger, and that the infant has an independent right to survive; that right must be protected by the State acting the [parens] patriae, where a life is in jeopardy and the parents have elected to provide no surgical care...." (19) Nevertheless, that "decision ... was promptly overturned in the "States highest court, the New York Court of Appeals", who ruled:
There are overtones to this proceeding which we find distressing. Confronted with the anguish of the birth of a child with severe physical disorders, these parents, in consequence of judicial procedures for which there is no precedent or authority, have been subjected in the last two weeks to litigation through all three levels of our State's court system. We find no justification for resort to or entertainment of these proceedings. (20) However, in a surprising turn of events, the parents of Baby Jane Doe changed their minds and surgery followed - Baby Jane Doe had a shunt installed to close her back. Once her back was healed, "she was taken home." As she left the hospital, Dr. Newman had not changed his prognosis: "She will still be severely retarded and I still think, bedridden all the days of her life"." (21) By 1987, Baby Jane Doe (now known as Keri-Lynn), was not forgotten. It was said of Keri-Lynn when she was at age four "it is hard to recognize the pain-wracked, unaware, bedridden creature of her doctors' confident predictions...." (22 One reporter wrote:
Keri-Lynn talks and laughs; she smiles and hugs and screams and plants kisses firmly on a stranger's cheek. (23)
Charmed by her sweetness, another reporter wrote
...Later, she whispered, `Dance Daddy dance,' as her father swept her into his arms to sway to the music of Stevie Wonder. (24)
At the beginning of the chapter on Baby Jane Doe, contributors to this report referred to this case as not one to be "dismissed as isolated". Inaccurate prognosis can prove to be fatal. (25) The Baby Jane Doe case should lead us to somberly adjudicate the following:
In popular debate, the question whether children with disabilities should be denied lifesaving treatment has frequently been couched as though the issue were whether the government should intrude into matters of parental discretion. In fact, however, for decades the universally accepted law has been that when parents make treatment decisions that will undebatably lead to the death of their nondisabled children, the state will intervene to ensure the children's survival by mandating provision of life-saving medical care. It is only when the children have disabilities that the claim of parental autonomy is given serious sympathetic consideration. (26) (emphasis added) No one can argue that an infant cannot defend his or her right to life. Yet many are classified as subhuman (27) and "better off dead." Still not one physician has been convicted for these murders. (28) Doctor Leo Alexander said, (see below) "The beginnings at first were merely a subtle shift in emphasis in the basic attitude of the physicians. It started with the acceptance of the attitude, basic in the euthanasia movement, that there is such a thing as life not worthy to be lived."
This is from the CHN website. And so is my new quote, actually Cheryl sent it to me in an email. :-)