Sunday, January 16, 2011

Saving Normal

A new, less-invasive and accurate blood test to detect Down syndrome early in a pregnancy will be available to the masses before long.

It is being billed as a test "which has the potential to reduce the number of women referred for invasive testing for Down syndrome by 98 percent". It is a test that will "save women from losing normal children just because of a procedure".

New Down Syndrome Test Could Cut Healthy Baby Deaths:  Non-Invasive Blood Test Could Eliminate Miscarriage Risk of Amniocentesis

This story was run widely in newspapers, on t.v. and on the internet. News anchors reported the story with enthusiasm. "Exciting!" and "Fantastic!" were just a few of the exclamations heard in the clips.

Amidst all of the excitement, there was little discussion in the news reports about the consequences and implications of the test. (The comments sections on-line are a different story--as anyone who has a personal stake in this issue is already aware).

One expectant mother who had the test (and it was negative) was so relieved to know that her baby "would be safe". A punch in the stomach would have felt better than hearing that statement. The message: Down syndrome is to be avoided at all costs. Saving "normal" babies is the goal.

I've been around this debate long enough to know that there will never be a last word.

"Personal choice", "burden", "cost to society", "quality of life"....are all issues which come around and around again. But what we are really debating is the value of human life.

If we value Life as a whole, we don't put qualifiers on it. We don't reason and rationalize lives out of existence.

More than 9 out of 10 expectant parents who learn that their unborn baby has Down syndrome will choose to terminate. This statistic is hard to process. It says plainly: to most people, individuals with Down syndrome are not worthy of life.

Loving two little girls with Down syndrome, its something I can't even begin to process.

Because our experience is not a hypothetical one.

Our daughters with Down syndrome are real. They are vibrant, beautiful people who are as worthy of life as anyone else. They are people. They are my children. They are my cherished daughters.


  1. I echo your sentiments. My hubby & I were part of the less than 10% who "chose life" after we learned of our son's Down syndrome diagnosis prenatally. This is a decision we have never once regretted. While life in "Holland" comes with its own special challenges, it's a life I wouldn't trade for anything. I just love my son too much.

  2. That night when it came on ABC News, I was kind of sick. I knew what it meant. While modern medicine is wonderful in some cases, in others it's deadly.
    I Proudly and lovingly have your two little Beauties hanging on my refrigerator door. And, the two little drawings they did are right on my wall by my bed. They make me smile. Thank You, Lisa for taking the time out of your very busy life to sit with them and then send them to me. I will Treasure them always! Hugs ~ Jo

  3. If we value Life as a whole, we don't put qualifiers on it. We don't reason and rationalize lives out of existence.

    that says it all... thank you for sharing about this. it's definitely hard to process.

  4. You put into words exactly how I feel. Thank you for putting this out there, Lisa.

  5. There should be so much more out there for expectant parents to read about, explore, SEE the children that have DS. There should be classes taught in medical school to OB/Gyn residents about the value of these little ones. Something more has to be done, something has to change.

    Love finds a way,

  6. I found your blog through Kecia's. You have such a cute family. I have a daughter that is 2 with Down Syndrome and I cannot imagine life without her. She is such a joy to all that meet her!

  7. Saving women from losing "normal" children because of a procedure? I am sick to my stomach. As if to say that a baby with Ds being lost because of a procedure was not tragic- it is only a "loss" when the baby lost is normal?

    "which has the potential to reduce the number of women referred for invasive testing for Down syndrome by 98 percent" many more babies with Ds are going to be terminated now because of the safety and ease of this type of test, combined with a diagnosis that will now come (conveniently) months before termination is no longer legally an option?

    I can't help but think there is an agenda behind this type of testing.

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  9. Stephanie, thanks for sharing this. The news was like a punch to my stomach last week. Sometimes the current seems so strong and one-sided...

    I stumbled across your blog via Patti {Lily's mom} and have enjoyed reading about your beautiful family. What a story you have to share with the world!

  10. Lisa, I am still trying to process what you just posted (my heart is trying to process it). I'm not sure I would have thought more than two seconds about the issue if I had heard it on the news before I had Kamryn. NOW, it is so personal. Time to get up, get out and start sharing/educating - I'm talking to my self! ;) thanks for sharing! You always say it just right! xoxo Andrea

  11. So thankful for the way you worded this... with a heart full of gratefulness and two darling examples of why you value their lives.

    I can't begin to tell you how hard I was pushed to do prenatal testing. For no reasons other than "advanced maternal age" (I was 29 years old) and the fact that I am deaf.

    My son was born with life-threatening kidney disease. Did it change how much I cherished him? Not an ounce.

    So thankful to read your post today.