Why We Refused the Screening Test for Down’s Syndrome

In the UK, when you go for your first trimester scan, you are also offered an optional blood test to screen for the risk factor of Down’s Syndrome. This only tells you the risk factor, but if at your 20-week scan some anomalies show up, this can further your knowledge about whether or not your child may have Down’s Syndrome.

When we were very kindly offered this test by the sonographer and midwives, I am sure they were only doing what they were supposed to and had the best intentions at heart. Many will take this test in order to prepare themselves for the challenge, and blessing, of raising a child with Down’s Syndrome. Some may take it in order to make an informed decision about whether or not they really want that challenge.

When we refused the test from the sonographer, she looked surprised, and asked us if we really knew the implications of what we were saying. She suggested we meet straightaway with a midwife to discuss the test in full. When we refused a second time after having listened to her explanation, the midwife pushed us.

“Are you sure?” she asked, “There is no going back, this is the last chance to do the test.”

My husband and I looked at each other, and a thousand words were spoken, but only word was uttered from both of our mouths: “No.”

“Why not?” we seemed to be asked repeatedly.

For us, abortion is not and will never be an option. I know that this is not everyone’s point of view, but for us, in our own family choices, this is not an option. I would rather lose my own life than that of my child. I hope and pray that that will never be tested, but that is the way I see it. So finding out the risk factor would never result in this for us, and may serve only to worry us.

Psalm 127: 3-5Now some people choose to take the test in order to prepare themselves should the risk be high, or to have peace of mind by knowing for sure that they are low risk. I confess, this occurred to us and we considered it. But the truth is, this is our first child, and finding out simply a risk factor doesn’t necessarily guarantee anything, so knowing the kinds of people my husband and I are, we felt that in our case, the test would only worry us rather than truly prepare us.

There is another reason, however. My husband works as a chaplain for a special needs school. All of the children at the school are classed as “severe” special needs, and for the 80 students who attend, there are 200 staff to support them. He has worked with children with a vast array of special needs for most of his life, as have his family. Although I have far less experience, I have encountered many children labelled as such over the years I have spent in youth work and schools, as well as in families who are friends of ours.

We have heard the pain and burden of parents in these scenarios, and don’t imagine for a second that it is an easy journey. The only reason we even considered the test was to prepare ourselves for the immense and beautiful work that these parents do, and for the pains and worries that they face and carry daily. But we have also seen firsthand the blessing and the beauty of such a situation. A child, any child, is a blessing. And the truth is, a baby is already changing, and will continue to change our lives forever. And if that child turns out to be labelled by society as “different”, well then we will be twice blessed, as our experience of such children have taught us more love, compassion, faith and joy than any others.

Sipping Lemonade

So I suppose, in the end, the main reason we chose not to have the test is this: we love this child already, and cannot imagine how much more we will love him or her when we meet them face to face this summer. And the truth is, there is absolutely nothing in this world that will make us love our child any less, or make us any less proud to be their parents, for however long they live and whatever their state of life, and no matter what difficulties we will face along the way as their parents.

If you choose, or have chosen, to take the test, please know that this post is not supposed to be a judgment, it is simply what we have come to realize in our own life and choices on this particular journey we are taking. We did consider taking the test for preparation, but we feel that the people we are, are not necessarily those who could deal with this best during pregnancy. This being our first pregnancy, we want to go through it as normally as possible. And I know that you, too, will love your child no matter what. That is the beauty (and the burden) of parenthood!

All of this is said much more beautifully and credibly by Lauren over at Sipping Lemonade in this post. She has a daughter with Down’s and also recently insisted on not taking the test in her 4th pregnancy. Her letter to those pregnant women who have had the test and found out their baby probably has got Down’s is also incredibly beautiful!

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6 thoughts on “Why We Refused the Screening Test for Down’s Syndrome

  1. Good choice Claire and eloquently and sensitively put. We never had the test with either of our two, and trusted that it wouldn’t be an issue. That said, if we met one of our babies with Downs we would cope with the surprise, love them unconditionally and learn to handle the condition with all the grace God supplied.x

  2. We had our first baby in Scotland, did the blood test assuming we would be reassured that we were low risk. Got a high risk result, offered amnio, which we refused. And then had to wonder the rest of the pregnancy… The baby did not have DS in the end. For my second pregnancy in Scotland, we refused all of those tests, had a good old-fashioned pregnancy. I can see how knowing we were high risk could have helped had our daughter had DS, but still I regret doing the test.

  3. Love, love, love this post! I found you over at Christian Mommy Blogger. We also refused the test for both of our children and although our 7-year old son does not have Down’s Syndrome, he has multiple disabilities. I blog about him and our journey at http://www.notjustanyone.org. He is a blessing and a joy and I was excited to read about the work your husband does! I also read your post about the stages of grief, which is something I wrote about, as parents of children with special needs often cycle through those stages. Thank you for sharing!

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