When Down Syndrome becomes a Death Sentence

There I was, sitting at my mom's kitchen table, feeling overwhelmingly in love with and prideful of my daughter, forgetting for a while that most of the world would eliminate her if they had the chance. Then behold! An article shines across my news feed with the glare of a thousand interrogation lamps and I feel defensive and ready to present my case to the world. Rather than risk exploding into a ball of flame or being reduced into a puddle of tears, I feel a need to address the topic. I feel a need to flesh out my feelings in word form and send them into cyberspace. My purpose and hope is that someone may hear me before making a decision that will shape the rest of their lives, and may, at the very least, choose to make a more informed one.

The article, which you can read here, was published by The Telegraph and is titled Hundreds of babies could be saved after Down’s Syndrome blood test is approved for NHS. It is about a non-invasive prenatal test being celebrated as one of the best things to happen in prenatal care in years. While I think it is wonderful that this test does not pose a risk of miscarriage, the article fails to discuss a disturbing truth. It fails to mention that, though this testing may save hundreds of babies, it will endanger many as well. If you know me at all, you can probably guess that I am talking about babies who test positive for Down syndrome.

I have nothing against prenatal testing in and of itself. I do, however, have a bitterly strong distaste in my mouth for the way Down syndrome is being presented to women and their partners by medical professionals across the globe. I am deeply disturbed and saddened by the lack of up-to-date information given to those receiving a prenatal diagnosis. I find that in many cases, if not most, the scales are tipped greatly in favor of terminating rather than continuing a positive pregnancy.

One paragraph of this article in particular is so very telling. It says “Introducing NIPT {non-invasive prenatal testing} into NHS maternity care means that more women can be safely reassured about the health of their baby without having an invasive test which increases the risk of miscarriage. It also means that more woman and their partners will be given information that allows them to make choices about their pregnancy that are best for them.”

First of all, I resent the wording of "women can be safely reassured about the health of their baby...". Doctors will tell you that children with Down syndrome have a higher chance of developing leukemia than typical children. Do they also tell you that children with Down syndrome are much more likely to respond positively to chemo and to overcome leukemia? Do they also tell you that people with Down syndrome are less likely to develop other types of cancers, and that, because of this, the 21st chromosome is being studied in cancer research programs? My daughter may have an increased risk for certain types of medical problems, but they are treatable, and she is not "unhealthy." On the contrary, she is happy. She is sweet. She is loving. She is smart. She is beautiful. She brings light to everyone around her. She is indeed healthy. I will also add that, in my opinion, there is a form of health more important than physical health, and through her, God is making me truly healthy.

Secondly, I am greatly bothered by the sentence, "It also means that more women and their partners will be given information that allows them to make choices about their pregnancy that are best for them.”. All this is really saying to me is that, because the test has no risk for miscarriage, more people will choose to have the testing, thus allowing more people to abort their child in the case that they test positive for Down syndrome. Why not say, "It also means women and their partners will be given information that allows them to be more prepared for their child."? Or "It also means women and their partners will be given information that allows them to begin the process of helping their child to fulfill their greatest potential."? I feel as if this article is written under the assumption that all people want to rid themselves of a child with Down syndrome. Why is this the tone society takes? How many lives would be saved if articles like this assumed the opposite? If medical professionals took on a positive tone, if they met a diagnosis with updated information, with real life stories of how far Down syndrome has come in the last 50 years instead of hurriedly pushing for pregnancy termination, what a difference that would make! If they told families how much people with Down syndrome can achieve, if they required counseling and education before allowing such a life altering decision to be made, how much fear and devastation could be eradicated? The technology for prenatal testing is so quickly outpacing education/awareness of what life with Down syndrome truly looks like in this day and age. This is resulting in less and less live births which in turn is making it more and more difficult for Down syndrome advocates to spread education and awareness. It is a vicious cycle that feels like a losing battle. Sometimes I like to imagine myself on top of the world's tallest mountain with the world's largest megaphone shouting "Stop!".

I'm having a hard time understanding why we are focusing on the negative. If there was a prenatal test for character traits, would you be offered abortion because you found out your child may be less outgoing than you had originally hoped? A person with Down syndrome is more alike than different, and though they may be different in some ways, this does not mean their lives are any less valuable. So why are families being pushed to abort their children because there is a chance they have Down syndrome? Every second I spend with my daughter pulls me further and further from understanding this genocide. If I think about it too much, it has the potential to break me. The only way for me to be able to cope with this sad reality is to focus on educating others, to hope that our story can help make a positive difference to someone, and to cling to my faith that all will some day be made new. Down syndrome is not and should not be a death sentence. I can't even begin to imagine life without my daughter.

If your baby receives a prenatal diagnosis of Down syndrome, I encourage you to reach out to your local Down syndrome association. Talk to parents of children with Down syndrome. Find families on social media to follow. Watch videos on YouTube. Reach out to me if you'd like. Please gather all the real life information you can before making a decision.

 

 


Sources:
www.sciencedaily.com/releases/2009/05/090520140359.htm
www.m.webmd.com/children/news/20050201/down-syndrome-mutation-helps-leukemia-survival
www.telegraph.co.uk/news/health/news/12100309/Hundreds-of-babies-could-be-saved-after-Downs-syndrome-blood-test-is-approved-for-NHS.html