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CHILDREN WITH DOWN SYNDROME:
BRING THEM UP OR LET THEM DOWN?
INTRODUCTION
Down syndrome is the most common genetic cause of severe learning
disabilities in children. Every year, as many as 6,000 babies are born with
Down syndrome in the United States. This genetic disorder causes delays in
physical and intellectual development. The condition varies in severity, so
developmental problems may range from mild to serious.
As recently as the 1960s, parents did have sonograms, blood tests, fluid
extractions, or genetic analysis to know about their baby’s health before it was
born. Many women are now able to get tested during their first trimester .
Pregnant women undergo many tests to ensure the health of the baby and
mother screening for problems such as gestational diabetes and high blood
pressure. However, unborn children are also tested for non -fatal, less severe
problems. Those who are found to have conditions s uch as Down syndrome are
almost always aborted.
The older the woman, the greater is the chance to bear a baby with Down
syndrome. Now, more women want to become mother later. And the screening
technology has made giant leaps making pre-natal testing become more
prevalent. As a result, a dramatic rise has been observed in the abortion of
Down syndrome babies.
“Birth or Abortion”? , has become the big question. Contenders of both sides of
the issue bring to the table arguments that can be convincing or
understandable.
My intention in this paper is not to cast a cold scientific look at the facts, but to
discuss the issue from a human perspective. A perspective that is trying to
understanding choices and therefore more tolerant.
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WHAT DOES THE REALITY LOOK LIKE?
Around the 1960s, most pregnant women just crossed fingers, said prayers, and
hoped for a normal, healthy baby. And a new mother who had awakened from
the anesthetic administered during child birth would ask the following
questions: “Is it a boy?”, “Is it healthy?”, (Birth and Abortion, p. 257).
James Watson and Francis Crick’s discovery of the structure of the genes
changed everything. Now, we know in advance whether the child who form s
from the fertilized egg will be tall, or sh ort; male or female, etc.
Now, every other day, newspapers report another “exciting breakthrough” in
pre-natal screening. As a consequence, pre-natal screening tests have become
more prevalent. And when the pregnant woman is encouraged to undergo
further testing, usually an amniocentesis o r chronic villus sampling (CVS) are
proposed. Both of these tests remove amniotic fluid or cells directly from the
mother's womb and are reported to carry a real risk of miscarriage.
Many other tools are used or being developed to identify unborn babies with
Down syndrome. One is a "triple test," in which the mother's blood is drawn
during the first trimester of pregnancy and tested for levels of
alphafetoprotein 1 and two other substances that indicate the presence of the
extra chromosome which causes Down syndrome.
People with Down syndrome, often, have mild to moderate mental retardation,
congenital heart defects, and an increased risk for certain diseases . Because of
all these health complications, an estimated 70 percent of all women in the
United States will choose to have prenatal screening tests . According to Susan
W. Enouen 2, about 90 percent of the pregnant women who are given a Down
syndrome diagnosis have chosen to terminate their pregnancies. She explains
that this trend is not isolated to the United States. In England, a 2004 study
showed that 94 percent of babies who were diagnosed prenatally with Down
syndrome were subsequently aborted 3.
For many couples, the opportunity to abo rt after an unfavorable prenatal
diagnosis would be a welcome alternative to suffering both from the family and
from the child born without the capacity to achieve fully, independent
adulthood.
1
a major plasma protein produced by the yolk sac and the liver during fetal life
Suzan W. Enouen, source: Issues Connector, April 2007; Reprinted with permission of Life Issues Institute
3
British Medical Journal, Aug-Sept 2004
2
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Some even live with the regret that the technology and the leg islation arrived
too late to change their fate and their children’s. One woman, who was in her
eighth month of pregnancy, declared that she “was waiting ‘in torment the birth
of a child who had a ten percent chance of being normal”. Another mother of a
two and half year-old child who was deaf because of German measles, wrote,
“How I wished then that therapeutic abortion were legal!” .( Birth and Abortion,
p.258)
It is clear that the “exciting breakthrough” has resulted in more unborn
children with Down syndrome killed in the womb. If the pre-natal screening
test is done to detect and treat a medical condition, or to ensure a safe delivery,
it has a good purpose. However, all too often, the real purpose of the pre -natal
test is to detect disabled babies in order that they may be aborted.
Therefore, instead of helping find a cure or assisting those with the syndrome
to live more healthy and happy lives, researchers are working on more
sophisticated tools to detect and destroy Down syndrome babies. Advocacy
groups insist that more money and energy should be devoted to live-giving
research to make a real and lasting difference.
It is always unclear who is supposed to be excited by the “exciting
breakthrough” in pre-natal screening testing. It is not even clear why people
should be. However, a common reaction among people with disabilities is what
Alison Davis 4 describes as “the cold inner grip of a feeling never far from the
surface”. According to Alison, this demonstrates that people with disabilities
“are tolerated” only on the sufferance and that society would really prefer them
“to be quietly eliminated”. She feels sad to know that about more than 85% of
babies who would grow up to be like her are now aborted, following a positive
pre-natal screening test.
There is a clear expectation that abortion will follow a positive screening test.
How many times have we read or heard of women who after a positive
screening test ‘had to’ abort disabled babies. They apparently have ‘no option’
but to abort.
“Our consultant guided us through the decision making process. She made it
EASIER to say yes (to the abortion) knowing it was the only way”, argues a
father whose baby was aborted, reports Alison Davis in her essay. Clearly
choice
is not what it might seem, wh en “the only way” is to “choose” the
“easiest option”, that is the death of the baby.
4
Alison Davis in her essay A Disabled person’s Perspectives on Pre-natal Screening, 1999
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Moreover, Bernadette Rothman in her book, The Tentative Pregnancy (1998),
reports that some hospital staff declare that “ counseling would become more
directive, that is, leading the couple towards TOP (Termination of pregnancy),
in response to the severity of the abnormality detected.”
For Deborah A. Driscoll 5, chief of the obstetrics department of the University of
Pennsylvania, “There are many couples who do not want to have babies with
Down syndrome”. These couples do not have either the resources, or the
support and “the emotional stamina” to bear a child with Down syndrome. And
that is why she recommends “testing be offered so th at parents have a choice.”
Pro-life advocates remain convinced that more couples would choose to
continue their pregnancies if they could better appreciate what it meant to
raise a child with Down syndrome. They believe that their positive perspectives
should be inserted into the decisions often dominated by “daunting medical
statistics and doctors obligated to describe the difficulties of life” with a child
with Down syndrome.
I believe like Dr Allen Nadel 6 of the Massachusetts General Hospital, replies t hat
“It’s a mistake to say ‘your baby is going to be mentally retarded, you should
have a pregnancy termination’. However, he adds that by the same token , it is
quite unfair to say ‘these are wonderful lovely human beings, you can deal with
all their problems and it’s not big a deal’. What we need is “to stri ke a proper
balance”.
There exist different and various motivations for the activism of people. Some
activists refuse the alternative of aborting on moral, religious, or emotional
grounds. This group, according to Peter Singer in his book, Rethinking Life and
Death: The collapse of our Traditional Ethics , “sincerely believe that abortion is
so great a wrong”. It is not just “about abortion politics or religion” for Nancy
Iannon 7, a mother to four daughters including one with Down syndrome. For
her, “it’s just faces disappearing”.
5
Deborah A. Driscoll is cited in Amy Harmon’s article Prenatal Testing Puts Down syndrome in Hard Focus,
nytimes.com, 05/09/2007
6
Dr Allen Nadel is cited in Amy Harmon’s article Prenatal testing puts Down syndrome in Hard Focus, nytimes.com,
05/09/07
7
Nancy Iannon is cited by Amy Harmon in her article Prenatal Testing Puts Down syndrome in Hard Focus,
nytimes.com, 05/09/2007
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Some often admit an individual and selfish motive of their activism. The Down
syndrome population in the United States, estimated to about 350,000, is
continually going down. And for them, this could mean less institutional
support and reduced funds for medical research.
It could also mean a lonelier world where there will not be enough
opportunities and acceptance for those who remain. Tracy Brown 8, a mother to
a two-year-old boy with Down syndrome admits, “I want opportunities for my
son. I don’t know if that’s right or wrong, but I do.”
Georg F. Will 9, Newsweek columnist, goes further and labels this expanded
testing as “a search and destroy” operation . He has come to the same conclusion
as Allison, who believes that “Potential children with down syndrome are
silently and methodically targeted for extinction” (cited on p. 55 in Life as We
Know it).
Is society repeating its past mistakes? For parents like George, this is exactly
what is happening. By doing away with a potential life because it might be ‘less
than a perfect human being’, aren’t we awakening the still fresh specter of the
NAZI push for a ‘super race’? Is society trying “to eradicate people with Down
syndrome”? Are people with Down syndrome “members of a dying species”?
If the answer to the above questions is no. Then where does society draw m uch
of the enthusiasm for pre-natal screening and abortion ? Does it stem from an
unconscious fear of disability? The plain true is that there is also an on- going
prejudice against people with disabilities.
Another associated strong factor is the idea that eliminating the congenital
disabilities “saves money”. Detecting and “eliminating” an affected baby costs
less than caring. “Screening For fragile X is Cost Effective and Accurate ”, the
title of an article written by Caroline White on page 208 of BMJ 10 7/26/1997, is
very illustrative. Children with Down syndrome and other severe congenital
disabilities are now perceived as “luxuries” society can no longer afford.
8
Tracy Brown is cited by Amy Harmon in Prenatal Testing Puts Down syndrome in Hard Focus, nytimes.com,
05/09/2007
9
George F. Will is cited by Amy Harmon in Prenatal Testing Puts Down syndrome in Hard Focus, nytimes.com,
05/09/2007
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British Medical journal
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In the UK, the Times reported in April 1994 that the cost of supporting a child
with Down syndrome was 12,000 pounds compared with a cost of 38,000
pounds for each disabled bay detected by screening and aborted.
In the same line of idea, Michael Berube further recognizes that it has never
been financially easy to have a child with Down syndrome. And it could be
worse if they were not better off now. “I didn’t believe a day went by when we
didn’t shake our heads and wonder what would have happened if Jamie had
been born when we were graduate students.”(Life As We Know It, p. 42)
The only thought of such a situation makes Michael anticipate the near future.
He imagines a scenario of the future in which an interlocutor would demand
“Why would I foot the bill” of someone who has chosen not to abort ? “Someone,
who has decided to bear a child who eats more than his proper share of the
national health budget” (p. 45). This could become a common societal reaction.
What is still very common is prejudice and fear against people with Down
syndrome. "Identification and selective abortion of Down syndrome
pregnancies raise important ethical concerns," according to the National
Institutes of Health's Guide to Clinical Preventive Services 11. "These concerns
include the implicit message that Down syndrome is an undesirable state, the
interpretation of induced abortion in eugenic terms by some persons, and
societal and economic pressures that may stigmatize families with a Down
syndrome member.”
To the doctors who refer to people with disabilities as exceptional children,
Alison Davis replies, “If they had had their way 44 years ago, I would not have
been exceptional. I would have been one of the nameless “defective fetuses”
that they consign to the medical waste bin every year, all in the name of
“choice”.
CAN WE CONTINUE TO MAKE EXCUSES?
In other regions of the globe, in Montenegro, for instance, most people would
choose to abort but they don`t do the pregnancy tests because they don’t have
the means to pay for the tests. On the contrary, in Senegal, because of their
strong religious beliefs, most women would not abort a fetus with Down
syndrome, but they could abort to save their marriage.
11
National Institute of Health’s Guide to Clinical Preventive Services cited in
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In China, where a birth control policy entitle s each family to one child, couples
would abort if the tests revealed that “the child who forms from the fertilized
egg” will be a girl. The government of China offers a lot of incentives to
encourage couples to remain childless and puts in practice a n armada of other
penalties to discourage couples to have children. In such a context, aborting a
child with Down syndrome or with any other congenital problems will be
common.
The option to abort comes burdened with a dilemma, however, because a
diagnosis of Down syndrome, definitive as it is, offers an incomplete prognosis.
Though diminished in his or her capacities, the child can live, but that his or
her quality of life or degree of suffering cannot be known in advance. “When
amniocentesis (CVS) renders a diagnosis of Down syndrome, it is unambiguous.
What is ambiguous is how severely the child will be affected by the syndrome…”
(Birth and Abortion, p. 281)
Besides, for Michael Berube argues that “No amount of fetal testing can
guarantee parents of perfect children. All the amniocenteses we can muster will
not bequeath us a brave new world without such ch ildren as Jamie, and dash in
it”, (Life As We Know It, p. 53). Therefore, as he further suggests, no debate
should “divide and distract us from the task at hand, namely, caring for our
children now that they’re her.” (P. 50)
One of the tasks, of paramount importance, is to provide the right information
in time to pregnant women and to parents living with Down syndrome children.
Berube regrets getting to know late. “I suppose that if we had found out that
James had Down syndrome when he was still in the third or fourth month of
fetal development, we would have started learning about Down syndrome
earlier that we did, and we’d have done what we could to prepare for a
potentially difficult birth.” (p. 47)
But so much depends on what kind of information is available and from whom.
When parents have no way of knowing how clever and ‘normal’ a child with
Down syndrome can be, they will simply have to rely on the advice of the
‘experts’. And if those experts tell them there was no way to raise such a child,
they will probably believe them. There’s no medical cure for this condition. But
increased understanding of Down syndrome and early interventions make a big
difference in the lives of both children and adults with Down syndrome.
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Information is at the same time crucial and powerful. Therefore, the people who
have the role and responsibilities to give information should be aware of how
to handle this. It can be painful responsibility to have to give “painful reality”.
The issues are emotionally charged. It is even believed that “the less said the
better” or “too much bad news, too much suffering and pain” (p. 260 Birth and
abortion). It is essential to know what information to give? When to give that
information? And most important is how to give that information?
The abortion debate has invited itself in the political debate. Now it represents
one of the trickiest issues to handle for many politicians. They are expected to
provide a clear standpoint.
Ronald Reagan is reported, while governor of the state of California, to have
declared that he could not “justify the taking of an unborn life simply on the
assumption that the baby may be born less than a perfect human being.” On
another recent note, Sarah Palin refused to abort a baby with Down syndrome
putting in the spotlight her pro-life alignment. Do the Republicans’ or the
Democrats’ construct their views on human, moral, economic grounds? How
much portion of votes did/will they get holding their standpoints? How many
votes did/will they lose by giving the wrong answer at the wrong question?
And abortion is, as everyone knows, one of those issues on which, you can
easily get different answers depending on how you frame your questions. I
agree with Michael Berube that “If you ask people whether the state should
have the right to override an individual woman’s jurisdiction over what
happens to her body, you’ll probably get a rather different set of answers than
you would if you asked whether a woman should have the right to kill an
innocent child”, (Life as we know It, p. 48). Some questions can be more “toxic
and coercive” than others”.
“The abortion debate should not be presented as a clash between the state’s
right to establish moral guidelines, on one side, and the individual’s r ight to be
free from state intervention, on the other” (Life As We Know It, p.49). It should
not also be presented as “The individual’s right to be bad”.
The Pro-life forces have taken the broadly moral position that it is w rong to
take a potential human life. But for “more extreme positions have equated
abortion to murder”, (Life as we know it, p.49). The defenders of these positions
demand the legislators to simply keep their laws off their reproductive system.
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It is true that many parents who test the fetus for Down syndrome will abort if
the test is positive. But is that enough reason to conclude that testing in itself
constitutes a threat to the existence of people with Down syndrome. The danger
for the children with Down syndrome does not lie in woman’s freedom to
choose abortion. It does not does it lie in prenatal testing. “The danger lies in
the type of society we are creating.
Social prejudice is obvious even with the discrepancy in the terms used to
describe able-bodied babies and disabled babies in the womb. If the former is
referred to as “perfect”, “healthy”, and “normal fetuses” , words such as
“imperfect”, “unhealthy”, and abnormal fetuses are used to describe the latter.
This, “reflect somehow what society reall y thinks of us”, argues Alison Davis.
People with the syndrome can live full, productive, and happy lives with help
from modern medicine and quality educational programs. "People with Down
syndrome are people first," insists the NDSS on its web site. They "have the
same emotions and needs as their peers and deserve the same opportunities
CONCLUSION
When his wife asked “(Do) you realize that we’re taking the chance t hat the
baby will be born with Down syndrome”, Michael Berube replied “Well, we’ll
love him all the more, then.” To choose to have a baby means to be ‘responsible
all the time’ and in all the circumstances.
A. Allen, author of Uneasy Access: Privacy for woman in F.. Society , cited in Birth
and Abortion, p. 296, believes that “Abortion is truly the right choice for some
woman and the wrong choice for others”. “The lack of clear boundaries can be
either a relief or frustrating” when someone has to make a crucial decision such
as give birth or abort. Should parents’ choices or decisions rest on financial
concerns? Certainly not. Should it be based on the state of their medical care or
health insurance? Should some form of prenatal testing be mandatory or
prohibited?” (Life As We Know It, p. 47)
What answers will Humanity bring to the big questions Michael Berube raises?
“Where does one draw the line when it comes to abortion?”
“What quality of life is worthy of protection or nurturing?”
“When is abortion more merciful than birth? ”
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For peter Singer, humanity best answers would be to “achieve a better
approach to life and death decision making”, (P. 4). May be, the right answers
lie in the type of society we decide to create. The answers lie in the missions we
assign our medical researchers. The drive should shift from ‘detecting’ to
improving. The futures of children with Down syndrome can be brighter if we
strive to seek how we could lead a ‘normal’ life with an extra chromosome. The
answers, according to the National Down Syndrome Society (NDSS), lie in
"ensuring equal treatment and access to services ”, “a struggle that every family
of a child with Down syndrome faces". The answers lie in "A greater
understanding of Down syndrome and advancements in treatment of Down
syndrome-related health problems” to allow people with Down syndrome to
enjoy fuller and more active lives."
“There’s a larger picture” we need to see. “It will offer practical solutions to
problems we now find insoluble, and allow us to act compassionately and
humanly.” Peter Singer, (p. 6)
We certainly do not want a society in which human life is valued by the kind of
cost-benefit analysis that weeds out those least likely to attain self -sufficiency
and to provide adequate ‘ret urns’ on social investments.
“A civilized society is judged not on how successful it is at screening out
disability, but how it accommodates difference 12.” We can achieve such a
society if for us all it is “self-evident that all humans are created equal and
endowed by their Creator with certain inalienable rights such as life, liberty,
and the pursuit of happiness”.
I hope that society will be able to remember this and enable a change of
attitudes to take place. They represent an “untapped potential”. Henry David
Thoreau suggests that if someone walks on a different pace, a different rhythm
it is because he hears a different music. If society manages to do so, it will
enable us all to listen and really hear the music of Patrick H. Hughes. We will be
able to enjoy the “music of possibility”, “the music of potential”, “the music of
opportunity”, “and the music of promise”.
Association for Spina Bifida and Hydrocephalus - Link - "Two screen or not to screen?! Page 17. Aug -Sept.
1995
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God grant me the serenity
To accept the things
I cannot change,
Courage to change the things
I can, and the
Wisdom to know the difference.
Living one d ay at a time;
Enjoying one moment at a time;
Accepting hardship as the
Pathway to peace.
Reinhold Niebuhr13
13
On the preface of Special Children Challenged Parents by Robert A.Nasseef
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REFERENCES:
Bibliography
Michael Berube, Life As We Know It: A Father, a Family, and an Exceptional Child, Pantheon
Books, New York, 1996,
Peter singer, Rethinking Life and Death: The collapse of our Traditional Ethics, The Text
Publishing Company, 1994
Kate Maloy et al., Birth and Abortion: Private Struggles in a Political World, Perseus
Publishing, 1992
Rachel Simon, Riding the Bus with my Sister, Penguin Group (USA) inc., 2003
Robert A. Naseef, Special Children, Challenged Parents, Paul H. Brookes publishing Co,
Baltimore MA, 2001
Internet Sources
Liz Townsend, Prenatal Target Unborn Babies with Down Syndrome, read on 12/11/ 2009
Amy Harmon, Prenatal Test Puts Down Syndrome in Hard Focus, New York times,
nytimes.com, May 9, 2007
Alison Davis, A Disabled Person’s Perspectives on Pre-natal Screening, 03/30/1999
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