In the early morning hours of July 17, 1984, when John Carroll was told that his newborn daughter had Spina Bifida, he asked “What’s that?”
Spina Bifida, one of the most common birth defects, involves the improper development of the spinal cord. This damage is done between 12 and 28 days after conception. A section of the back fails to close and the spinal cord is contained within a protruding membrane sac. This can result in paraplegia, incontinence, loss of sensation and muscle imbalance. It is often accompanied by hydrocephalus which is a build-up of cerebral spinal fluid in the brain. To prevent further damage to the central nervous system, which can result in death, greater paralysis, blindness, or grain damage, the general practice is to close the back surgically and install a shunt into the brain within 24 hours after birth.
Carroll, an advocate of children with Spina Bifida, charges that some hospitals have adopted a practice of selection which segregates newborns into tow distinct categories, those who are treated and those who are not treaded. “These decisions” he says, “are almost always based on quality of life considerations where someone makes a value judgment that the baby’s life is meaningless. These decisions have no moral, legal, or medical justification and appear to constitute a serious breach of
Evidence of non-treatment
He has spent the past year calling for a full parliamentary inquiry into the matter. The reaction from parliament has ranged from refusal to believe this happens in Canada, to the belief that the handicapped are better off dead.
Carroll, of Thunder Bay, counters that “If necessary surgery was denied a baby on the grounds of her religion, race, or nationality, there would be justifiable fury throughout the country. Yet, when this happens to a baby because she is handicapped, the response is one of sickening silence.”
He charges that he has evidence that babies from Northwestern Ontario were selected for non-treatment at St. Boniface Hospital and Health Sciences Centre in Winnipeg. In a recent case, he and his wife, Joanne, successfully intervened and helped parents obtain treatment for their baby elsewhere.
“When we are talking about selection for non-treatment,” Carroll said, “let us be careful about the terms. What we are really talking about is selection for death. That makes such practice intolerable and repugnant.”
If hospitals are not willing to implement specific policy guaranteeing handicapped babies the right to necessary treatment, there could be a constitutional challenge in the courts. One of Canada’s foremost experts in medical law has been consulted and has offered encouragement and advice.
Carroll makes an appeal to anyone having familiar knowledge of such cases to provide him with information and details. “This is very important to all who believe in the dignity and value of human life,” he says. “We can win this, but on the other hand, I cannot afford to carry the financial burden alone and I appeal to the generosity of the public to contribute to the tremendous costs which lie ahead.”
Those readers wishing to contact John Carroll may write to him c/o The Interim. We will forward all correspondence.
