“Spina Bifida is a birth defect which involves damage to the spine and nervous system. The vertebrae of the spine and the spinal cord are not formed properly and surgery is usually required immediately after birth. The long-term effect frequently includes weakness or paralysis of the legs and problems with bowels and bladder control. Spina Bifida is sometimes accompanied by hydrocephalus (accumulation of fluid within the brain), which is controlled by a surgical procedure relieving the fluid pressure.”
In North America about one child in a thousand is afflicted with Spina Bifida. In New Brunswick the rate recorded between 1973 and 1979 was closer to 1.5 per thousand births. The precise cause of Spina Bifida is not known, however, genetic predisposition, nutritional deficiencies, and or the exposure to drugs or chemical agents, are all considered to be possible causes. (Task Force on Human Reproductive Problems, 1983)
Contributing members of society
“Prior to the early 1960’s, the majority of children born with Spin Bifida either died shortly after birth or suffered serious multiple handicaps and retardation. Today, thanks to aggressive medical care, we can expect children born with Spina Bifida to have normal intelligence, normal life spans, and be able to become contributing members of society.”
Modern medicine is greatly divided with respect to the manner in which newborns with Spina Bifida should be treated (or not treated). Some pediatricians practice what is called “selection.” They examine the child at birth and if they find paralysis in the legs or even a curvature of the spine they select the child for “supportive care only.” This is a nice expression for what is actually non-treatment. These pediatricians will treat as few as 15% of children, while the remaining 85% are mildly sedated and encouraged to die. Some, however, live for years with rather severe handicaps which could have been corrected had early treatment been given.
An entirely different approach is advocated by those who believe that every child has a right to quality treatment. According to Dr. David McLone, Chairman of Pediatric Neurosurgery at Children’s Memorial Hospital in Chicago, this aggressive treatment includes he neurosurgical reconstruction of the neural tube, followed by wound closure in anatomical layers. With reference to this same intensive treatment, Dr. Donald Riegle, Pediatric Neurosurgeon at St. Francis General Hospital in Pittsburgh, said, “This microsurgical repair has led to unbelievable preservations in neurologic functions.”
Dr. McLone reported that in this program, mortality at five years follow-up is almost 10%. Another 10% are generally considered less than competitive for a variety of reasons. The remaining 80% become “competitive, ambulatory and intellectually able.”
Parents who have children with Spina Bifida usually share the same goal in that they want the best for their child. Why then is there such a great difference in the kind of health care offered? Speaking on the prevalence of non-treatment in the U.K., Dr. Riegle said, “make no mistake, from the National Health Insurance in Great Britain came selection (for non-treatment) and that for economic expediency.”
These pressures of “economic expediency” have also led some treatment centres to accept a middle of the road approach. They largely reject non-treatment, yet they accept a treatment level which is less than “aggressive.” Unfortunately many parents are let do believe that they are getting the best of care, when in fact hey are not. Shall we permit economic expediency to deny, reduce, or withhold quality car for all?