Thursday, May 7, 2009

My Down's Syndrome Paper

Ok Justin, you asked for it, so here you go. And anyone else that cares to read...go for it

Would a world without children with Down’s syndrome be a good thing? Many would think a world where no one suffered from this would be a wonderful thing since there would be fewer people in the world suffering from a disorder. There are, however, many parents that think this would be a disaster. (Harmon 6) Whether from a cure or from abortions, many parents of children with Down’s syndrome shrink from this thought. (Harmon 6) To them, this would be a terrible thing for their children. How could this be? Many feel that this would lead to a world of intolerance towards the children that have Down’s syndrome. (Harmon 7) Others fear the lack of funding for programs aimed at helping these individuals survive through life. (Harmon 10) There is also a fear that by allowing women under thirty-five to be given the option of testing for Down’s syndrome, many of these women, who otherwise would have had the children, will get abortions. For many years, only women who were thirty-five and over were given the option for testing, since that is when the risk of having a child with Down’s Syndrome spikes drastically. (Wiki 12) However, since women who are younger have children at a faster rate, eighty percent of babies born with Down’s syndrome are born to mothers who are under thirty-five. (Wiki 12)

If scientists could somehow find a way to prevent Down’s syndrome from ever occurring, most people would celebrate the finding. It seems that some parents with children who have the extra twenty-first chromosome that causes Down’s syndrome will not be one of the joyous ones. They fear many unseen repercussions of the disappearance of Down’s syndrome. One parent, George F. Will, calls testing for Down’s syndrome, a “search and destroy mission” designed to eliminate all children being born with the disorder. (Harmon 25) Unlike what Mr. Will seems to think, many prospective parents do not have the resources or stamina they feel necessary to care for these children. (Harmon 13) If the world were perfect, every prospective parent of these children would be able to undertake the task of raising these special souls. The world, however, is not perfect. In my life, I met one such mother. She had two older children with mental problems, a crumbling marriage and a job that, at the time, she thought was keeping them from poverty. She became pregnant and instead of getting the all’s-clear sign from the amniocentesis, she found out that the daughter she was carrying had Down’s syndrome. Even though it tore her up inside, she knew she would not be able to take care of this child properly. She had an abortion.

This scenario is not unique. Does this seem to be the result of a “search and destroy mission,” the desire to eradicate all such people from the face of the earth? (Harmon 25) I think not. Every soul that is brought into this world is precious and children with Down’s syndrome are even more special, and the parents who raise these children deserve praise, but this does not mean the other side of the situation should be ignored. So many women do not have the resources or the situation to be able to care for these children; they may also believe that it is unfair to bring such children into this world. These women should not have the right to end their pregnancy denied to them.

Many parents of children with Down’s Syndrome oppose the testing of women under thirty-five.(Harmon 7) Testing these women would, of course, lower the chances that they would have the child. The current rate of abortions with Down’s syndrome babies is at ninety percent. (Harmon 4) These parents do not want these women to abort their pregnancy, even though many claim that they are “pro-choice.” (Harmon 16) Some such parents have gone to hospitals with their children, hoping to convince the doctors that they should have parents that receive the diagnosis of Down’s Syndrome in their child go to them first before making the decision to abort. (Harmon 15) They feel that the parents would choose not to abort their child if they spend time with their children. (Harmon 15) Doctors in general are taking this plea cautiously. (Harmon 15) Their take on this is that it would complicate the parents’ decision. (Harmon 15) Often times by the time the amniocentesis (the preferred test to diagnose Down’s syndrome in the womb) can be performed with accurate results, it is already the second trimester. Current laws concerning abortion prohibit late-term abortions. This means that there is only a small window of time in which parents can legally have an abortion. There is also the fear that if the parent has already decided to have an abortion, spending time with these families could enhance the feeling of trauma that they will already be feeling. (Harmon 15) The parents parading their children with Down’s syndrome about to hospitals want the doctors to revise how they tell parents about the diagnosis of Down’s syndrome. (Harmon 30) They do not want the doctors to say things like “I’m sorry” or “I have some bad news.” (Harmon 30) They do not feel that having a child with Down’s syndrome is either something to be sorry about, nor is it bad news. The doctors, for the most part, feel that they cannot just tell a parent the glossed-over version of the diagnosis. (Harmon 30) They can say anything that sounds cheery, but the reality still remains that the child, if born, would not be “normal.” (Harmon 30) There will be many complications in this child’s life. (Harmon 29) There is the possibility that they will never be able to even live on their own, which brings up the question of what to do should they outlive the parent. (Harmon 29) There are just so many negative aspects that the doctors feel that they need to present to the parents so they can make their decision with the information that they need. (Harmon 30)

So what drives the parents of these children with Down’s syndrome to visit hospitals to beg doctors to look at things their way? (Harmon 3) Many parents feel that if there are fewer children born with Down’s Syndrome, that there will be less funding and fewer programs to help those with the syndrome that are living. (Harmon 19) Some parents acknowledge a selfish motive in this—that they want their child to have every opportunity. Some say that their desire is not so much political to them; it is just about “faces disappearing.” (Harmon 17 18) Some feel that if there were fewer children born with Down’s syndrome, that the remaining ones would be “unwelcome.” (Harmon 25) There is also the idea that if broader prenatal testing were to be performed, fewer Down’s syndrome babies would be born…if any. (Harmon 3) This, they say, would lead to a world in which there would be no genetic differences. (Harmon 7) What would happen to diversity, they ask. (Harmon 7)

Even if no one were ever again born with Down’s syndrome, if all the pregnancies were terminated, would this mean that there would be no more funding? Just because there would be no children born with Down’s syndrome would not mean that no one would want to be able to solve this problem. Does anyone truly want to end a pregnancy? No one wants the news that their child will not function normally, that it will have mild to moderate mental retardation. Though there is no proof to back the idea, it would seem common sense that even if every pregnancy with a Down’s syndrome child were aborted, there would still be research for the cure of it. The fact that it exists and causes so many abortions would likely have scientists searching for a cure. These parents who are so ardent in their crusade to disallow prenatal testing for all expectant mothers have been just as eager and determined to fight for the rights of their children who are already in this world. (Harmon 9) Many have taken time away from that work to throw themselves into the work of trying to ensure that these children are born. (Harmon 11) Their children are already allowed in the public schools where they receive education and help. (Harmon 14) These programs would not be discontinued so long as these parents fight. While many of these women claim to champion a woman’s right to have an abortion if they so choose, they contradict this. (Harmon 16) They would rather women younger than thirty-five not know of their child’s diagnosis, since they may choose to have an abortion. This is more selfish of them than one woman’s statement that she wanted every opportunity for her child. (Harmon 18) That they would be willing for a woman to unknowingly have a child that she is not ready for, just so that they can feel better about the future of their own child, is a most abhorrent idea. They would sacrifice another family’s well-being for their own. How can these women honestly say that they champion a woman’s right to have an abortion? They defend their right to have their child, but trample another woman’s right to know and abort a child that she has not the means of supporting properly.

Would a child with Down’s syndrome be more unwelcome if there were no more children born with the syndrome? I think it would change little. If we truly examine ourselves, we must admit that there is a sense of discomfort when we are around these people. We may say that we do not think differently, but we do. We are not sure what to do, or what to make of them. This is part of human nature to be wary of those that we view as “different” from ourselves. We may not wish them ill-will, but we still do not know how to act. No amount of children born, or not born will alter this about ourselves. The cure would be to spend time with them, so we can be more comfortable with the idea. But not all of us have that opportunity. Instead, we muddle through life uncertain of how to respond to these individuals. I would not say that they are unwelcome, but they do make people uncomfortable. This is not the child’s fault, but the inability of human beings to interact comfortably with differences. There will always be diversity in humans, whether it is skin colour, religion, race, or mental capabilities. The difference when it comes to a person with mental disabilities comes when the parent will be ill-equipped to deal with the difficulties that life with a child like this will present. In the case of any disability, the parent may not be able to handle the emotional, financial, or social ramifications of having such a child. (Harmon 19) That is not the parent’s fault! They did not ask for such a burden, all they wanted was a child. We may not be able to tell what sort of child we will produce, but when there is an opportunity to know what they will be signing up for by continuing a pregnancy, such as with Down’s syndrome, we cannot fault the parent for terminating the pregnancy.

Fortunately, there have been some steps taken to help alleviate the problems faced when a parent discovers that they have a child with Down’s syndrome. Through recent legislation, there will be current information provided to these prospective parents. (Allot 11) Most important, I believe is the list provided of families who are willing to adopt children with Down’s syndrome. (Allot 12) I am not in favour of eliminating these children; as I said, they are precious souls. I understand that some families are simply not able to take care of these children. This offers a wonderful alternative to ending the pregnancy, which would cause heart-rending trauma to the mother; they can instead carry the pregnancy to its full term and then give it to a family that is equipped to handle the special needs that this child will present.

Born or not, a baby with Down’s syndrome will have an effect on the family. I know of a man who wanted to become a scientist so that he could try to cure Down’s syndrome and keep it from ever happening. He was influenced by his mother’s decision to end her pregnancy once it was discovered that the daughter she carried had Down’s syndrome. I have personally watched the effects of this woman’s decision. I respect her decision. I don’t know how she could have managed to care for this child when she already had two children with many problems that still plague her, even though they are well into their adult lives. There is no way that this woman could have maintained her sanity if she had bourne that child. It would also be an awful environment for that child. She must work hard to keep herself afloat financially, and therefore would not be present to care for the child. The daughter would also be exposed to hateful reactions from an already existing daughter. She could not have provided for the child in her position, and I fully support her decision to end the pregnancy.

There are issues with this decision that do not affect just people with Down’s syndrome. In discussing my topic for this paper with my brother he brought up another issue related with this. My brother has Aspergers Syndrome, which is a form of autism. He frequents many forums where there are many others with Aspergers. There is a fear expressed in these forums that if abortion in cases of Down’s syndrome, will there not also be abortion of babies with Autism or Aspergers, supposing there were a test that could detect such things in utero. There is a major difference that I think should be pointed out, lest others fall into such a way of sliding along this slippery slope. People with Aspergers, are highly functional. Many may go through life successfully, succeeding in their careers, personal life. There is no similarity between them and those with Down’s syndrome except the word syndrome. While those with higher levels of Autism may be under the same category of Down’s syndrome in the sense that they may never be able to function independently, despite their usual high intelligence. But can we assume that just because there is a high instance of abortion with Down’s syndrome pregnancies, does not mean that the same would occur with Autism or Aspergers. This is an awful slippery slope fallacy. You cannot judge the two in comparison with each other. They both have different arguments and situations.

For myself, I could not have an abortion, though I respect and will defend the ability of all other women to do so if that is what their conscience dictates. I believe that all women should be able to have the right to have their baby tested in utero to determine whether they have any serious handicaps. This is what I would want. If a woman does not want to have these tests done then she should not be required to. It is each individual woman’s right to decide what happens to her child. If we take away that right, where is our freedom? Every woman ought to be informed of both sides of a diagnosis. In the case of Down’s syndrome, I would not rule out a discussion with a family that has a child with Down’s syndrome, especially if the parent was uncertain about how Down’s syndrome would affect their life and what would be demanded of them in the situation. Saying this, however, I must say that this must be the woman’s own choice. If she has already decided to have an abortion, then that is her right and option. Even when making that decision, I believe a woman must be fully informed of both the benefits and problems that will result. A woman must be informed that yes, the pregnancy will be terminated, solving the current problem, but there will be possible long-term consequences to the mother’s mental health. Abortion must not be seen as a cure-all situation. As with anything in life, there will be pros and cons to every decision. I would also say that the women that are opposing the tests being offered to younger women have every right to do so. They must be allowed to express themselves if our society can function freely. I also think that they are to be honoured for their decision to raise children that others would not be able to care for. They should be praised for their strength, but also counseled to understand that others may not have their strength of will or the ability that they have. Just because they have been able to raise these children does not mean that everyone has the strength or ability to do so. They must not force their decisions on others who are not capable. This would be doing a disservice to both the parent and the child, who already has things they must conquer. There must be an air of tolerance if our country is to survive. We must not condemn those who think differently than we do. If we do this, who is to say that some day we won’t be on the other end of things. We must hold fast to our own principles and let others be. We can control ourselves, but not the actions of others. Shouldn’t we then concentrate on our faults and try to fix them than on other people’s faults? So now let me ask, is a world without Down’s syndrome a blessing or a curse? That is up to you to decide.

Works Cited

Harmon, Amy “Prenatal Test Puts Down Syndrome in Hard Focus” New York Times 9 May 2007.

Web. 26 March 2009

Allot, Daniel “The Trig Palin Effect.” The Washington Times 12 October 2008

26 March 2009

1 comment:

CrouchingOwl said...

I finally found the lynch pin of the argument that the down syndrome case and asperger's case can be equated found in a more or less scientifically presented article. Unfortunately all the real studies I'd want to quote at you are behind paid only subscriptions.

Twin studies have
demonstrated that, for monozygotic twins, if one twin has autism, there is a 60-70%
likelihood that the other twin will also have autism. When developmental abnormalities
or language impairments that fall short of a diagnosis of autism are considered in the
non-autistic twin, the concordance rate between identical twins rises to approximately

This doesn't quite prove what the people on the forums try to say with it, but the basic claim is that that the "developmental difficulties" and language difficulties referred to would be categorized as asperger syndrome. If you accept that, then there is 30-20% of the twins with asperger syndrome who are essentially genetically indistinguishable from their autistic peers. Broadly stated, the differences between autism and asperger syndrome may be environmental, not genetic or may arise from a non inherited mutation that could occur between otherwise identical twins. So a genetic test for autism would effectively blanket target asperger's syndrome as well.

Now that's all fairly loose conjecture from what I was able to find. Just because the paper mentioned non autistics with developmental problems does not mean it really mean people with AS. Actual studies or papers on the subject may have been more explicit on that point. But that's how the argument runs. With the twin concordance not being at 100% and the non autistic twins being likely to be on the autistic spectrum, it cannot be assumed a genetic test for one wouldn't overlap the other.