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Treatment of Impaired Babies & Children
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Right or Wrong? What Should be Done?
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6/5/2008
Margaret “MJ” Purk
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Introduction
What is the meaning of the word “impaired”? In the English language this word has
many connotations but the Merriam-Webster 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 babies and children 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 taking into consideration the following; the history of treating babies and
children who were and are considered to be impaired, the pros of beginning or continuing care
of impaired babies and children, and the cons of treating individuals considered impaired. Be
they medical professionals, family members, friends and educators or the impaired themselves,
everyone has a different opinion on the implications and meaning of caring for and interacting
with mentally and/or physically impaired individuals.
History of Treating the Impaired
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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. Constantinople and the whole religion of 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. Letting a
child die was the same as during Plato’s time that it was just the way society had to be.
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).
Hippocrates brought up many questions in the minds’ of many doctors during this time. As
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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
(Pernick, 31)
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” (Pernick, 15). 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
(Pernick, 103)
operation. Doctor
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Haiselden secretly had been practicing infanticide previously and came out in public stating his
position regarding the treatment of defective infants (Pernick, 4). Table 1 and Table 12 state
how the public felt about treating impaired babies and who should decide the fate of such
individuals. After this case was made public, the Chicago Daily Tribune came out, two days in a
row, headlining the case of the Bollinger baby,
(Pernick, center photographs)
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(Pernick, center photographs)
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 sustaining
therapies for their children? If parents refuse, is there an obligation for anyone else to
intervene, e.g. 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
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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.
Arguments for Treatment of Impaired Babies & Children
When looking at arguments for treating impaired babies and children, one 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, 9).
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
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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 (SMA) typical 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. The results can
be seen in Table 8. He disagrees with the
(Bach, 353)
statement of most doctors in letting the
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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.
Arguments against Treatment of Impaired Babies & Children
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 refuse 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 infanticide 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
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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 lay 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).
Conclusion
Surprisingly, the vast majority of data that was found about the treatment of impaired
babies 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 implications and 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.
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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).
My Opinion
I would consider myself extremely biased on the issue of treating the impaired, infirm,
invalid, diseased, handicapped or different; whichever word one would prefer to use to
describe people who seem unlike others. Having a condition that limits my ability to accomplish
many tasks on my own has allowed me perspective which many others, considered normal,
may not have. In my experience the treatment of impaired babies and children varies greatly
from hospital to hospital and diagnosis to diagnosis. According to many medical professionals
my diagnosis should have only “let” me live a maximum of two years, and yet here I sit, five
months into my twenty-first year of life.
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. I wish I could
get the bumper sticker again that says – ‘The ADA: To Boldly Go Where Everybody Else Has
Been Before’" (Stefans).
I did a survey amongst people who are impaired themselves and people who have
impaired family members or medical professionals who work with impaired individuals. The
answers that I received were amazing. One mother to a child with FG syndrome, “an X-linked
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genetic syndrome, believed to affect both boys and girls; which causes a variety of physical
anomalies, developmental delays, and special health needs”, got right to the heart of what I
feel is the way medical professionals treat the impaired (FG Syndrome Family Alliance, Inc.). She
stated “the criteria are not by me, but by medicine… cannot speak, cannot write, cannot dance,
cannot follow a typical school program… I am really fed up with all this cannot, because he can
do a lot of things and he [fought very hard] to reach each of them, first of all breathing…”
(Anonymous Parent). Cannot and will not are words that, in my opinion, are overused in the
medical profession. Certainly there are tasks that each person is unable to do, but most
individuals do not focus on their inabilities. Life is not about the things we are not able to
accomplish, it’s about seizing the moment and enjoying every little pleasure that each day
holds.
Word Count: 2,486
References
Anonymous Parent. (May 12, 2008). Survey for Parents of Impaired Babies & Children (Version Office 97
to 03) [Data file].
Bach, J. R. (2004). Management of Patients with Neuromuscular Disease. Philadelphia, PA: Hanley &
Belfus, Inc.
Blank, R. H., Caplan, A. L., & Merrick, J. C. (Eds.). (1992). Compelled Compassion. Totowa, NJ: Humana
Press.
Bondeson, W. B. (Unknown). Impaired Infants. Power Point Presentation presented at University of
Missouri-Columbia.
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Cheyfitz, K. (1999-2000). Who decides? The connecting thread of euthanasia, eugenics, and doctorassisted suicide. OMEGA, 40(1). Retrieved May 11, 2008, from PubMed Central Journals
database: http://www.ncbi.nlm.nih.gov/pubmed/12577901
FG Syndrome Family Alliance, Inc. (n.d.). FG Syndrome Family Alliance. Retrieved June 1, 2008, from
http://www.fg-syndrome.org/
Fine, R. L. (2000). Medical futility and the Texas Advance Directives Act of 1999. Baylor University
Medical Center Proceedings, 13, 144–147. Retrieved May 11, 2008, from PubMed Central
Journals database.
Gross, M. L. (2000). Avoiding anomalous newborns: preemptive abortion, treatment thresholds and the
case of baby Messenger. Journal of Medical Ethics, 26, 242–248. Retrieved May 11, 2008, from
http://jme.bmj.com
Impaired. (2005). In Merriam-Webster Dictionary. United States of America: Merriam-Webster,
Incorporated. Retrieved May 12, 2008, from http://www.merriam-webster.com/dictionary/
impaired
Jones, L. C., & Sandelowski, M. (1996). ‘Healing Fictions’: Stories Of Choosing In The Aftermath Of The
Detection Of Fetal Anomalies. Social Science & Medicine, 42(3), 353-361. Retrieved May 11,
2008. doi:10.1016/0277-9536(95)00102-6
Mercurio, M. R. (2005). Physicians’ Refusal to Resuscitate at Borderline Gestational Age. Journal of
Perinatology, 25, 685–689. Retrieved May 11, 2008, from http://www.nature.com/jp
Morrow, J. (2000). Making Mortal Decisions at the Beginning of Life: The Case of Impaired and Imperiled
Infants. Journal of the American Medical Association, 284(9), 1146-1147. Retrieved May 11,
2008. doi:10.1001/jama.284.9.1146
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Pence, G. E. (2008). The Ethics of Treating Impaired Babies. In Medical Ethics (5th ed., pp. 176-197). New
York, NY: McGraw-Hill. (Original work published 1990)
Pernick, M. S. (1996). The Black Stork: Eugenics and the Death of “Defective” Babies in American
Medicine and Motion Pictures since 1915 . New York, NY: Oxford University Press.
Rhoden, N. K. (1986, August). Treating Baby Doe: The Ethics of Uncertainty. The Hastings Center Report,
16(4), 34-42. Retrieved May 11, 2008, from JSTOR database.
Stefans, V. A. (May 21, 2008). Survey for Parents of Impaired Babies & Children (Version Office 97 to 03)
[Data file].
Full Size Tables & Charts
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