Yesterday, whilst going about my usual internet browsing, I noticed a guest post on the Mumsnet website entitled ‘I fear the eradication of Down’s Syndrome’. The post was written by Hayley Goleniowska, Hayley blogs at www.downssideup.com about her experiences of having a child with Downs Syndrome. It caught my attention as, at the time of reading the article, I was awaiting the results of my very own Downs Syndrome screening test.
I’ve had the test with all three of my children now and never once questioned whether I should have opted in for the testing, until now. The article really made me consider what we would do if the results came back as ‘high risk’. The current screening process by the NHS is optional and provides a ‘high’ or ‘low risk’ of delivering a child with Down’s Syndrome. The results are based on blood tests and a nuchal screening scan usually conducted at 12 weeks gestation. If you opt to have the screening undertaken, the sonographer not only measures the usual areas of the baby during your scan, but also the amount of fluid in the cavity at the back of the neck. This is about as far as my knowledge of the testing goes. It’s completely non-invasive and doesn’t hurt.
Reading Hayley’s article and then referring to her blog made me rethink my whole perception of Down’s Syndrome children. I am not ashamed to say that I had always thought it would be hard work, almost a burden to have a child with any kind of disability. I was someone who would have seriously considered termination had a confirmed diagnosis of Down’s Syndrome been given to me. I was of the mindset that ‘it wasn’t fair to bring a child into the world with Down’s Syndrome’. Now, thinking about it a little more, I think this way of thinking is selfish. I’ve met people with Down’s Syndrome and reading Hayley’s posts and seeing pictures of her and her family I realised that Down’s Syndrome children’s lives can be just as rich and fulfilling as anyone else’s – who am I to put a stop to that?
Soon after I read the article I heard the postman at the door. I dashed down and saw an envelope from the hospital trust. I knew what it was and I ripped it open immediately. The letter explained that, based on my scan results and blood tests, my risk of having a Down’s Syndrome child was approximately 1 in 27,164. So – pretty low risk. This is about what it was for my other two. I had expected the number to be a little lower now I am 7 years old then when I conceived my first child. I can’t lie, I was relieved. I don’t know anything about Down’s Syndrome and it would have sent me into a panic.
Having read up on the subsequent tests offered to women who are categorised as high risk I had already decided I wouldn’t take them up on the offer due to the risk of miscarriage. So, I wondered to myself why I have the screening tests in the first place. I guess I felt that forewarned is forearmed. If I was high risk then I would have the chance to read up on what to expect and I would still have the options for further testing if I wanted them. I don’t want to be part of eradicating Down’s Syndrome. I really hope that Hayley’s article might have made other women, who thought the same as me, rethink their ideas and perceptions.
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Darling, I hope my article wasn’t too emotional for you, I know the whole testing screening time can be fraught with worry. It’s such a tricky area, it’s not the test itself that worries me, but that women are ‘herded’ in a particular direction and for some choice is taken away, the choice to continue a pregnancy. I would never judge anyone’s decisions or choices, I just think we need to stop and have the conversation as a society. Thank you for writing this beautiful post and congratulations! H x
Author
Thank you so much Hayley. I thought your post was fab-very thought provoking and poignant for me at this time. It made me reconsider everything I had previously perceived about having a child with Down’s and I feel a lot more open to it all now and as a result more relaxed in this pregnancy x
I have bookmarked Hayley’s article to read actually. I had the NT test both times but purely to be able to plan for having a baby with Down’s Syndrome should the results show a high chance. I’ve worked in special needs education for a number of years which I think has helped me to understand the facts of various additional needs. Anyway, I’m glad you’re feeling more relaxed about everything xx
Author
It’s a good read and her blog is lovely. Yes, I think sometimes the unknown is what makes us worried. For example I have a complete lack of knowledge hence my trepidation. Thanks x
My local NHS Trust ask whether you’d like to be tested for Down’s Syndrome, and I can remember the community midwife with my first child saying to me ‘only have this test if you will act upon the results’ #BlogBumpClub
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Yes-I kind of agree with her!
Wow, thanks for writing this post, my thoughts were exactly like yours! #brilliantblogposts
Carolyn
http://stylishmemories.com
I had Bella tested, but not Reuben. I’d still have had Bella even if high risk but wanted to be prepared. With Reuben they said if I didn’t mind then there wasn’t much point in testing. People with DS always look so happy and like they are enjoying life so much 🙂
The only thing that would have made me consider a termination is if it’s something that would cause pain & misery every day. I think if they can experience happiness every day then life is worth living 🙂
What a beautiful and honest post. Our youngest has Down’s Syndrome. My husband knew very little about it and despite no invasive testing, we pieced together during the pregnancy that our little one was highly likely to have DS. It really helped him to get his thoughts together and do some research before our little boy arrived. I was never in any doubt about continuing the pregnancy but I’m certain there are others who wouldn’t and I fear, for ill informed reasons….
So wonderful to be informed and Hayley’s blog and Hayley herself offers so much insight and reassurance where sadly the medical professional and so called experts so often fall short. Thanks for linking up to #brilliantblogposts x
Author
Agreed. I feel so much more relaxed now I have more knowledge of Down’s Syndrome. Thanks for commenting 🙂