CASE STUDIES.



a. The severely handicapped infant.
b. The mongoloid child.




THE SEVERELY HANDICAPPED INFANT.



The basic materials for this study have been taken from a Case Studies in Bioethics in The Hastings Center Report volume 3, number 4, September 1973, Case No. 149. On the Birth of a Severely Handicapped Infant. (Note: The case presented here represents an actual medical situation. Nonetheless, the way it is presented is fictionalized.) The case is quoted here verbatim.

“Missy, the daughter of Mike and Sue B., was born with spina bifida with meningomyelocele, a defect which occurs approximately once in every 500 live births. Spina bifida refers to an abnormal opening in the spine, and meningomyelocele is a condition in which portions of the spinal cord, as well as meninges and spinal fluid have slipped out through the abnormal opening and are enclosed in a sac which protrudes from the backbone. Up until 10 years ago, almost 80% of these babies were certain to die in early infancy. Today, surgical treatment is available to ameliorate the condition, and about 75% now survive, although affected children all face a lifetime of illness, operations and varying degrees of disability, including mental retardation.

Soon after Missy’s birth, a physician consulted with Mike B., giving full details of the severity of the condition which, in her case, already included spastic paraplegia, incontinence of urine and feces, and club feet. He explained the necessary treatment, costs and prognosis and urged that immediate surgery be performed to prevent further nerve damage. Without surgery, he said, Missy would probably contract meningitis which, if untreated, would either lead to more severe handicaps or even be fatal. He explained further that if Missy survived an operation, she would never be able to walk without the aid of braces and crutches, that she would have to undergo extensive physical therapy all her life, and that she had a 90% chance of developing hydrocephalus, (“water on the brain”).

The parents were well-educated, with a good income and comprehensive medical insurance. Their three-year-old daughter was health. Each had known families with abnormal children. Sue and Mike decided not to have Missy treated.

After her discharge from the hospital, Sue returned daily to feed and hold her child. Both she and Mike spent much of their time caring for Missy in the hospital and became very attached to her. When at the age of two weeks Missy began to develop symptoms of meningitis, Mike and Sue reversed their decision and asked to have her treated.

Surgical repair of the meningomyelocele was successful and Missy was discharged. When she was 4 months old low-grade hydrocephalus developed and a shunt was inserted to drain the cerebrospinal fluid from her brain. At age 6 month she was able to sit up with the aid of a special splint, and her personality was emerging, although it was too soon at that time to test her mental development. Mike and Sue seemed to have adjusted well to Missy and tried to treat her as much like a normal child as possible.
Have the doctors and the parents acted in Missy’s best interest?”

The first response to the above question is given in the Report by Warren T. Reich, a Senior Research Scholar at the Kennedy Center for Bioethics, Georgetown University, Washington, D.C. A summary of the response is as follows.

Each case of spina bifida is unique and must be evaluated accordingly. We are always obliged to employ ordinary means to preserve life, even in hopeless cases. We are not obliged to use extraordinary means. There is, however, no checklist of medical procedures indicating what is ordinary and what is extraordinary. Normally full and adequate treatment should be given but if the prognosis is very poor it may be legitimate to provide only supportive care.

There are five points to be considered when this decision is made.
1. Pediatric patients have a higher moral claim on extraordinary care than the elderly.
2. In making decision a good guide is what decision would I make for myself under similar circumstances.
3. The assumption that without treatment the infant will die may not be true. The expectable should be directive.
4. Comprehensive care may mean a number of major interventions through the years. Should a new decision be made each time further treatment is required? The parents’ first decision was objective. The change in their decision was motivated by their experience of affective parent-child bonding and it is both, understandable and praiseworthy.
5. The reasonable hope for success is relative and is a source of ambiguities.

The second response was provided by Harmon Smith, a Professor of Moral Theology at the Divinity School, Duke University, Durham, North Carolina. Here is a brief summary of the response.

Prior to present day medical technology Missy’s situation would have been simply tragic. Today, this tragedy is compounded by the need to make choices with uncertain results.

The physician has two options. 1. Do not treat Missy. She will then contract meningitis which may be fatal or not. In the latter case her condition will get worse. 2. Treat Missy hoping that damage can be minimized. The extent of damage cannot be precisely predicted in either case.

According to the Hippocratic Oath, the physician’s directive is the patient’s well being. In practical terms, this means to prolong life and relieve pain. Sometimes, as in this case, it is not possible to do both. A balance is to be reached in Missy’s best interest, and accountability is measured by the foreseeable consequences of the physician’s decision.

As to the parents’ decision, it seems that their desire to keep Missy alive, which came from their love for their child, led them to the decision to treat Missy. This happened to be the right decision. The outcome of their decision was, however, not foreseeable, and was, therefore a matter of good luck for the time being.
In this scheme of decision making the social aspects of the problem, that is the balance between the benefit to Missy and the benefit to society, is not considered.

I leave it to the reader to check out any further details of these answers from the original source. To be sure, there is a great deal of uncertainty to this case, which makes decision making really difficult. On the other hand, the uncertainties of the case are somewhat circumstantial, and for that reason we are forced to consider our system of values in more general terms. How would you have done? What would have been the reasons for your decision? What is the scale of values you would have used to make your decision in terms of benefits to Missy, to the physician, to the parents, and to society? The answers do not come easily.

For further information on this case also check Parents, Physicians, and Spina Bifida by Rosalyn Benjamin Darling, Hastings Center Report, Volume 7, Number 4, 1977.


THE MONGOLOID CHILD.



What is it to be a mongoloid child? The syndrome, also called Down’s Syndrome from the name of the physician who first recognized it in 1866, is the result of a developmental imbalance introduced by 21 trisomy, that is, chromosome 21 is present in triplicate instead of the normal diploid two, one from each parent. Such a situation may arise through non-disjunction when the maternal and the paternal chromosomes do not separate but go together into the same egg cell of the mother. When this egg is fertilized there will be three instead of two of chromosome 21. The probability of non-disjunction increases with maternal age. Another, rarer source of 21 trisomy is translocation where a copy of the chromosome resides on another chromosome and will represent the third copy after fertilization. Whatever be the source, the result is a whole list of anomalies of which two are the most significant. One is a set of malformations affecting the heart in about half of those with the trisomy. Some of these malformations can be life threatening and require immediate medical intervention with varying successes. The other major anomaly is mental retardation affecting all mongoloid children. The IQ range, however, is quite broad, but most fall within the range of 25-50.

How these children fair much depends on the environment in which they live. Most parents and siblings accept the mongoloid baby and surround it with love and concern. Many parents with Down syndrome children emphasize how unusually affectionate and agreeable these children can be. They may become burdensome for reasons outside of them.


(Source: Medical Genetics by Nora and Fraser, Lea & Fabiger, 1974.)


In an editorial correspondence Rita Weissman (Hastings-on-Hudson, NY) points out some of the more difficult aspects of raising a mongoloid child. In a brief summary, these are her remarks.

The probability to have a mongoloid child increases with the age of the mother and so is the probability that the parents will die before their mongoloid child. This will place a heavy burden on the other members of the family. The brothers and sisters are probably trying to make a life for themselves, and other relatives may not be able to care for a handicapped person financially or mentally. It seems to be an act of selfishness on the part of the parents to bring a mongoloid child into the world and then burden the innocent bystanders, including the child with a precarious existence.

Karen Lebacqz from Harvard University responds. Ignorance about Down’s syndrome leads to a self-fulfilling prophecy. If the mother is told that her child has Down’s syndrome and will be severely retarded and will be a burden to the family then she probably will find it so. Some of the attributes considered to be part of the nature of the syndrome are often really part of the nurture provided for the child. Children with Down’s syndrome are generally happy and do not suffer, and are emotionally well adjusted. “. . .the studies of Kramm and of Faber do not seem to bear out the belief that unbearable burdens are put brothers and sisters or the parents. Many parents indicate that the experience has given the family a new sense of values, and drawn them closed together.”

Note: The Home Box Office presentation of the movie Educating Peter is a good source to see the responses of mongoloid children to people around them and the responses of people to them. All told, it is a difficult but at the same time an impressive and uplifting experience.

What would be your view on Down’s syndrome children?


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