Most cases involved Spina Bifida.
About thirty years ago, in medical school, we debated whether or not to treat these patients. In Africa, we did not treat them, and the result was that most died in infancy.
Treating them requires treatment first to close the hole in the spine, then physical therapy and braces to help them walk, then surgery to drain the bladder, and in many cases surgery to drain the secondary hydroceophalus.
Most of those involved, however, are not retarded. They are often on the lower end of normal intelligence but able to function despite their disabilities. But there is a lot of strain on families, so often doctors encourage abortion if it is discovered on routine ultrasound...
Indeed, although most "partial birth abortions" are for social reasons, spina Bifida is probably the most common "medical" reason for late term abortions of viable babies...parents are frightened by the bleak picture painted by counsellers, and often agree to abortion of severe cases...the same severe cases that the Dutch are killing...
And if they are missed and not aborted, then many are willing to kill them indirectly even in the best hospitals in this country...
Here is an classsic example about "non treatment" decisions in the heartland for these children, a classic paper that got little publicity at the time...
Frieda Smith, who gave birth to Stonewall Jackson Smith in 1979, remembers being confronted by a doctor just days after a difficult birth, before she had time to come to terms with her baby's birth impairment.
"He (the doctor) told me that I would always have to take care of him, that he would be blind, that he would never know me, that he was more like some kind of animal than a human being," she says. "He never really sat down with me and explained what the operation would do for Stoney." Ms. Smith was never told that the failure rate for spina bifida treatments is very low, nor did she understand that the operation would reduce the degree of sensory, mobility and intellectual impairment that her son experienced. "He made it sound like Stoney would live longer, but he wouldn't ever get any better."
Ms. Smith signed a consent form agreeing that Stonewall would be fed and given minimal "supportive care," but no antibiotics or surgery. Later, when she had questions about her baby's treatment, the doctor refused to make himself available to answer them. Ms. Smith also says that she did not know that she could have taken her son to another hospital, where he would have been treated at once.
During the five years of the study, 69 babies with spina bifida were born in the Children's Hospital of Oklahoma (now known as Oklahoma Children's Hospital), a teaching hospital affiliated with the University of Oklahoma. Thirty-three babies were recommended for "supportive care" without treatment; eight of them were eventually treated anyway, either because their parents insisted or because their parents or guardians eventually obtained more accurate information. All of the 24 babies whose parents consented to the "supportive care" regimen died. ( a twenty-fifth baby in the "supportive care" regimen was moved out of state by his parents and lost to the study. Two of the eight babies that were eventually treated also died, possibly because the treatments came too late.) Most of the babies who were deprived of treatment were born to women in the welfare system, who were paying for their care with Medicaid benefits. None of the 36 babies that were given antibiotics and surgery died from the effects of spina bifida. (One did in an accident.)
In addition to being poor, many of the families of the children that were chosen to die were poorly educated. Frieda Smith felt that she was manipulated by a doctor who took advantage of her medical ignorance. Her experiences, and the experiences of other mothers whose babies died, raised serious questions about whether they truly gave "informed consent" when they signed the forms agreeing to the "supportive care" regimen. Indeed, some parents came away from their meeting with the doctor under the false impression that the hospital was not required to treat babies who did not meet the "criteria for treatment" (i.e., the formula)
What eventually broke the story was when a Black Congressman noticed that most of the "non treatment" babies were poor and black or Native American...
Here is an example of the bleak life lived by one Okie who did get treated for his Spina Bifida...
Whether killing by partial birth abortion or by infanticide or by merely killing by "non treatment decisions", The dirty little secret, however, is that "quality of life" does not depend on the level of the sac on the back, nor on the hydrocephalus.
Americans have rights given by the Creator, and if the saints are correct, that same creator sees us all of equal worth...Our worth does not depend on the wealth of the parents involved, nor even if that person is welcomed by those parents. After all, if it is true that rights come from the creator, it is true that the creator insists on responsibility for the most vulnerable as part of our duties in life.
And, as one right wing fundamentalist wacko pointed out,
In America's ideal of freedom, the exercise of rights is ennobled by service, and mercy, and a heart for the weak. Liberty for all does not mean independence from one another. Our nation relies on men and women who look after a neighbor and surround the lost with love. Americans, at our best, value the life we see in one another, and must always remember that even the unwanted have worth.
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