Treatment of Impaired Infants

I want to start this paper by asking what is the meaning of the word “impaired"? In the English language this word has many definitions but the Dictionary defines the word “impaired" as “being in a less than perfect or whole condition: as a: disabled or functionally defective —often used in combination <hearing-impaired> b: intoxicated by alcohol or narcotics" (Merriam-Webster). The dictionary states that impaired means less than perfect, but who defines the word “perfect" and whose definition would be acceptable to everyone? According to Dr. Stefans, “The World Health Organization defines impaired as a physiologic change that adversely alters function. We refer to the function that is impaired because the whole person is not really impaired, just certain skills or abilities" (Stefans).

The treatment of infants who are by medical standards impaired is seen as an ethical issue by many people. This paper will focus on the justifications for and against treating the impaired infants taking into consideration the following; the history of treating babies who were and are considered to be impaired, the pros of beginning or continuing care of impaired babies, and the cons of treating infants considered impaired. Be the medical professionals, family members, friends and educators everyone has a different opinion on the implications and meaning of caring for and interacting with mentally and/or physically impaired individuals.

Throughout history, there have been many different periods of time where the treatment of impaired babies was either supported or frowned upon, depending on the goals of the society in general. Way back to before Christ, the Hebrew bible frowned upon the killing of infants. Christianity ruled that the killing of infants was illegal and should not be done, but there was no other advice or help available to assist in raising disabled or impaired children. The ancient Greeks and Romans said that the killing of children would be better to help weed out the unfit from society and society would be better without them. “Plato wrote in “The Republic," that “life not worth living" and noted “he would not try . . . to prolong a miserable existence and helped end the patient’s “useless" life and to also stop the spread of “bad" human traits" (Cheyfitz, 11). Also during this time, letting impaired babies die was not considered murder but was just accepted as a way of life.

The ancient Greek healers suggested that the three goals of treatment were “cure, relief of suffering, and the refusal to treat those “overmastered by their illness" (Fine, 145). As

people became doctors, they were required to recite the oath which in part stated, “I will neither give a deadly drug to anyone if asked for it, nor will I make a suggestion to this effect" (Cheyfitz, 11). This pained doctors who then had to learn how to prioritize infants lives into who was worth living and not worth living and above all, who would decide who lived or died?

By the 1900’s, the choice dealt with the idea of eugenics vs. euthanasia. It was thought upon at this time, that “eugenics was meant to be “better off dead" vs.

euthanasia that was meant to be “better not born". In the United States, the first case in recorded history occurred in 1915 when Dr. Harry Haiselden refused to treat an infant with multiple disabilities and convinced the parents to not perform a life-saving operation. Doctor Haiselden secretly had been practicing infanticide previously and came out in public stating his position regarding the treatment of defective infants. After this case was made public, the Chicago Daily Tribune came out, two days in a row, headlining the case of the Bollinger baby,

even so much as being displayed as headlines despite the fact that World War I was currently going on. This case sparked an outcry although many other doctors came out in public holding the same theory and practiced it too.

During this time, doctors would tell the families what they, the medical staff, were going to do to help the child and would refuse to state the other side of the coin. Many families were left to no other choice but to let their child go. This case, among many others that were announced during that time left a few questions that needed to be solved before continuing on and helping doctors and families during this time. Basically it brought up a few main issues that needed to be dealt with, “Do parents have the right to refuse life-saving/life saving therapies for their children? If parents refuse, is there an obligation for anyone else to intervene, like health care professionals, the courts, the state, etc.? Who defines what is an acceptable quality of life" (Bondeson). For many years after the Bollinger baby, the case of eugenics was silent until recent cases in the 1970’s and 1980’s brought the subject of treating impaired babies back into the public life.

When looking at arguments for treating impaired infants, we must first look at the past three decades to see where the arguments stemmed from. Many lawyers first looked at 1973 Roe v. Wade to decide first when a person has legal rights. “With respect to the right to life, the word “person" as used in this article and in the fifth and fourteenth articles of amendment to the Constitution of the United States , applies to all human beings, including their offspring at every stage of their development, irrespective of age, health, function, or condition of dependency" (Blank).

The first two cases are the Baby Doe Cases that occurred within a year of each other. Both sets of parents refused to have surgery to correct genetic anomalies that would have saved their children’s lives because of the information received from the doctors. In both cases, a third party initiated proceedings to have the courts intervene on behalf of the children in question. “The moral complexities of Baby Doe have forced physicians to deliberate the most responsible ways to implement new technologies" (Morrow, 1147). Doctors now had to try to figure out what was the best way to treat the impaired infants and how to best explain it to the parents. They could no longer pass judgment on the infants and only explain one side of the story to the families. “The physician has an obligation to inform the parents regarding the potential consequences of their choice, but is generally not qualified to overrule their assessment of the family’s interest" (Mercurio, 687). President Reagan stepped in and made reference to Section 504 of the Rehabilitation Act of 1973 reminding hospitals of their duty to treat all children in order to make sure all babies received treatment.

The law that challenged most doctors and professionals was the 1984 Child Abuse Amendments. The first two mandates of this law stated clearly that, “All such disabled infants must under all circumstances receive appropriate nutrition, hydration and medication. Second, all such disabled infants must be given medically indicated treatment" (Blank, 81). In reference to Baby K, an infant who was anencephalic, "Absent of finding of neglect or abuse" parents have the right to make decisions about medical treatment for their children and, when parents disagree, the court should support the parent who decides in favor of life" (Bondeson). “This stemmed from the case when the doctors wanted to remove Baby K’s from her ventilator and let her die but the family did not agree" (Pence, 194).

Dr. John Bach, leading researcher for the treatment of children and infants with

neuromuscular disorders currently teaches family members and other doctors about giving children a fighting chance. Children with Spinal Muscular Atrophy typically do not survive past one year of age; Dr. Bach conducted a study of parents of children with SMA to ascertain their child’s quality of life. He disagrees with the statement of most doctors in letting the child go because there is an easy way to keep these children alive and to fight for them because they do have a high quality of life.

Looking back to Dr. Haiselden and his supporters, many of today’s doctors feel the same way about treating impaired babies. Refusing to treat impaired babies was a “humanitarian effort to relieve the intense suffering of afflicted individuals and a utilitarian attempt to protect society against costly and menacing defectives" (Pernick, 89). Doctors hold on to these theories because no one really knows how disabled children feel so they often don’t want to think about it and just assume that the child has no chance for a meaningful life. “Newborns, as with any never-competent patient, enjoy no such right. Any protection from inhumane treatment must come from others; the parents’ right to decide for their child should not be as absolute as their right to choose for themselves" (Mercurio, 685). Mercurio’s thoughts along with the thoughts of professionals believe that a parent cannot know what their child would want so the doctor would tend to override parental wishes. Doctors in Sweden “tend to withhold treatment from the beginning from infants for whom statistical data suggests a grim prognosis" (Rhoden, 34). Along with Mercurio’s thoughts and the thoughts of Swedish doctors, “Additionally, one might argue that the statistical approach ignores the ability of ‘outliers’ to survive or the willingness of some parents to cope with tragic circumstances" (Gross, 244).

One of today’s leading supporters for infant treatment is Peter Singer, a professor of Bioethics at Princeton University. Peter Singer argues that parents and physicians can justify infanticide on the basis of total utility: “When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed. This argument relies on a “replaceability" thesis. It stipulates that since newborns lack the rationality, autonomy, and self-consciousness of persons, they can be selectively killed and replaced with healthier ones in the same way that early prenatal diagnosis affords selective abortion of severely deformed fetuses" (Morrow, 1146). A vast majority of doctors share a common belief, “We think of them as only acting like they act in our office, think that parents are making it up if they describe better function, have no idea how people with disabilities do things and often share the way public's perceptions that any disability or impairment means reduced capacity for success and happiness, thinking that specific things can't be done because we don't know what the technologies and modifications really are. We sit around thinking the wrong things in life are important; we assume that someone who walks has to be happier than someone who doesn't, that someone who does not need any equipment to breathe is automatically happier than someone who does, and forget that it is love and relationship that gives life meaning. We think of the hospital and clinic as more than the tiny proportion of life's total experience that it usually is" (Stefans).

Surprisingly, the vast majority of data that was found about the treatment of impaired infants seemed to be against the killing of them. The treatment of babies and children who are, by medical standards, impaired is seen as an ethical issue by many people. Medical professionals, family members, friends and educators or the impaired themselves, have a different opinion on the meaning of caring for and interacting with mentally and/or physically impaired individuals. Gina Laurie is quoted in a book by Dr. John Bach as saying, “Beware of underestimating the limitless potential of individuals with disability. Independence for a ventilator user means that one can say, “So I use a ventilator, I am in charge of it. I direct my own life and take my own risks. I am the one who decides about my quality of life"" (Bach, 347).

I feel that the treatment of impaired infants varies greatly from hospital to hospital and diagnosis to diagnosis. I believe all people, be they two days or twenty-two years old, deserve the chance at a future. I agree with Dr. Stefans when she says, “Disability is a normal part of human experience and people with disabilities are more like than unlike everybody else. We as a society need to unlearn the idea that people with different abilities belong in different places.