Doctors Against Down Syndrome - An Essay

Earlier this semester in my English class, I was given the assignment to write an argumentative paper.  We all got to choose our own subjects and me being me, I decided to go big and controversial; I decided I wanted to write about abortion.  From that first idea I slowly narrowed my topic down, going from aborting children with disabilities to focusing on Down syndrome to finally focusing on Down syndrome and how doctors handle telling parents that their unborn or newborn child has Down syndrome.  Doing the research was both fascinating and saddening.  The fact that people seem to have so little issue with a child being aborted solely because it isn't perfect but then have a fit at gender selective abortion makes no sense to me.  And then also reading about how many doctors push parents towards abortion was just appalling.  Despite the fact that I felt a bit overwhelmed with writing the paper and honestly didn't think it was my best work initially, my professor loved it and reading it again, I'm very proud of what I accomplished.  So, I decided to share it, not to brag or anything, but because this is a controversial issue and I think it's one that needs to be addressed.

Doctors Against Down Syndrome

Imagine, if you will, a pregnant young woman waiting with her husband for the results of a prenatal test.  There's some concern that something might be wrong with the baby, so the couple waits anxiously as the minutes tick by.  When the doctor at last arrives, his face is a mask of doom.  The test indicates that their child has Down syndrome, he will have health problems all his life and never be able to read, to write, or have a job.  He would be wholly dependent on his parents for his entire life.  The kindest thing his parents could do was abort him; it would be better for everyone involved.  The doctor's words cause the couple to question if they should keep their child; he painted such a bleak future.  The doctor continues to pressure them until they at last agree to abort their child without ever knowing the positives of having a child with Down syndrome, and without ever getting a second opinion.  With the abortion of their son, a potential future is destroyed, a future with a smiling, bouncing baby boy, a little different from the other children, a little more challenging, but a joy nonetheless.  All that he could have been, all that he would have done, is forever lost.

The situation presented here is sadly not out of the ordinary.  Expecting couples who receive a diagnosis of Down syndrome are more often than not pushed by their doctor to opt for abortion.  Furthermore, they are given inaccurate information about the condition that generally continues to push them towards abortion as the best option.  Without the correct information, the parents feel that they're simply not up to the task of raising a disabled child and choose to terminate the pregnancy.  It is the doctors' job to give the facts, all the facts, both good and bad, and let the parents decide what is best for them and their child.  Doctors are not gods; it is not up to them to determine which children are worth being born and which are not.

These days it has become more and more common for doctors to pressure women into using prenatal testing as a means to determine the health of their child, telling them that it is "the responsible thing to do" (Saxton).  These tests claim to be 99% accurate, but positive results can be wrong 50% or more of the time (James).  Since doctors aren't always informed of the limitations of these tests, the results are taken as being that 99% accurate and many women choose abortion based on those results alone, choosing not to opt for further testing (James).

Part of the issue here is that doctors often treat any kind of abnormality found in either prenatal testing or routine ultrasounds as a problem (ABC News).  Despite the lack of confirmation that the child is at risk of any form of birth detect, doctors often treat the results as a done deal.  This sets a negative tone for everything that follows and causes undue anxiety and stress for the parents.  It's no wonder that women choose to have an abortion at this point when their doctor treats the diagnosis as something tragic.

When women don't choose to abort after positive testing, they are further pressured into undergoing an amniocentesis test.  This test involves inserting a needle into the womb and withdrawing a sample of amniotic fluid for testing (Mayo Clinic Staff).  An invasive test that has the potential of miscarriage, it is used to confirm or rule out the diagnosis that the noninvasive prenatal test showed (Mayo Clinic Staff).  If the results of the amniocentesis confirm that the unborn child has Down syndrome, the doctor often proceeds to pressure the parents into having an abortion.

It is at this point that doctors begin to tell parents all of the negatives of having a child with Down syndrome.  They focus on the shorter lifespan and the medical issues like heart defects, leukemia, hearing loss, vision disorders, and early onset Alzheimer disease to name a few (Schrad).  They also focus on the need for special education, the social ostracism, and the inability to be independent (Schrad).  But it's more than just the fact that are negative: it's also the way the facts are delivered.  For parents, it all gives the impression that their child will have no future or at least not a future worth living for.  It highlights the physical, emotional, and financial burden they will have to shoulder.  Many parents don't feel up to the challenge of raising a child with a disability and without any positive information to balance the negative, it seems kinder and easier to choose to terminate.  Since doctors are medical experts, most people figure that they know best and their advice is worth taking or at least seriously considering.

Doctors are equally negative when parents refuse prenatal testing and find out at birth that their child has Down syndrome.  Rapp described one mother's experience in her book:  "So they diagnosed Amelia right away, on the delivery table.  She was barely out, I barely got a chance to catch my breath or marvel at my first baby when the doctor pours this bad new all over us.  'She's got Down syndrome,' he says to us, very coldly.  And after he tells us about the blood testing and confirmations and all this stuff, we say to him, 'But what does this mean?  What should we expect?'  And just as coldly he says, 'Don't expect much.  Maybe she'll grow up to be an elevator operator.  Don't expect much.'  We clung to each other and cried" (263).  Such experiences as this mother's are not uncommon.  Doctors deliver the "bad" news with little tact and little compassion, going so far as to blame the mothers for not taking advantage of prenatal testing (Rapp, 263).  At a time when a woman is most vulnerable, doctors fail to show even common human kindness when informing a woman about something that will completely change her life, marring what should have been one of the happiest days of her life.

Doctors inform parents about all the negatives of having a child with Down syndrome.  Some of those negatives, like the health issues, are very real but with today's advances in medicine and technology, most of the health problems they face are treatable.  However, other negatives are simply incorrect.  Parents are

often told that their child will have a significantly shorter lifespan.  In 1983, that was true with the average lifespan being 25, but today that average has risen to 56 years (Marcus).  Parents are further told that their children will be fully dependent on them for all their lives.  While it's true that some people living with Down syndrome do remain at home, there are many others who choose to go to college, get jobs, move and get their own places, and even date and get married.  And people with Down syndrome are unfailingly cheerful.  Though they certainly struggle with the same emotions that others experience, especially loneliness, they are generally very happy people (Mullen).

That's not to say that it's easy.  Parents raising a child with Down syndrome will have to deal with the medical, social, educational, and behavioral challenges that go along with having a disabled child.  The key to retaining their sanity is to surround themselves with family and friends who act as a support group.  The saying "it takes a village to raise a child" could never be more true than when raising a child with Down syndrome.

Today upwards of 90% of children with Down syndrome are being aborted (Shriver).  This is in large part due to doctors giving biased and inaccurate information.  This needs to stop.  Parents deserve to have access to up-to-date and accurate information when choosing their child's fate.  Doctor's should be one of multiple assets, not the only one much less one who forces their ideals onto the parents.

It is the doctors who need to change in order to give expecting parents all the information they need so they can make a truly informed decision about whether or not to abort their child.  The results from prenatal testing need to be presented to the parents as a possible issue, not a confirmed positive or negative diagnosis.  When delivering a Down syndrome diagnosis, doctors need to show compassion and use sensitive language when telling the parents.  Abortion should not be the immediate suggestion upon learning of a positive Down syndrome diagnosis.  Doctors need to be equipped with up-to-date information on Down syndrome and be able to explain both the positives and negatives of raising a child with Down syndrome.  If they are unable to do so, then they need to refer the parents to someone who can.  Moreover, they should be able to refer the parents to support groups or individuals with experience raising or assisting children with Down syndrome.

If doctors painted a more balanced picture for expecting parents rather than one that is solely negative, it is quite possible that we would see a decrease in abortions.  Children and adults with disabilities seem to be on their way out with all the new technological advances that are moving towards removing the factors that cause

the more common disabilities like Down syndrome.  But for now they are here with their own unique personalities, likes and dislikes, wishes and dreams.  Yet even in the medical profession they are viewed as something to be avoided at all costs, they are considered liabilities rather than human beings with their own value (Shriver).  Yes, they are different, but does that make them wrong, does that mean they should be exterminated?  Certainly not.  They are valuable members of society that have their own worth.  They offer us so much even in just how they love life, bringing smiles to others with infectious happiness.  The positives of raising a child with Down syndrome far outweigh the negatives.  It's high time that doctors learn this and work to their job as doctors and save lives, even if it's doing something as simple as giving accurate information.