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A Mother's Response to the U.K.’s New Prenatal Test for Down Syndrome

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My world has changed over the last couple of years. I had a child, a beautiful baby boy with eyes that are turning hazel and a giggle that could make even the most hard-hearted of you smile.

With our first-born, we didn’t get much sleep, struggled to get him to eat, worried through coughs and colds and high temperatures and now have the challenges of tantrums and growing independence (or stubbornness, depending on how you look at it).

With our second-born, we didn’t get much sleep, had few problems with getting him to eat, worried through coughs and chest infections and currently have the challenge of trying to ignore the “whine cry” — the one they start and won’t end until you’re back doing what they want.

Therefore, not much difference between the two, except the second one has Down syndrome — a life-altering shock to my world and one I wonder about day after day. I’d always thought I wasn’t the type who would cope well with a child with disabilities, that I wouldn’t have the patience or inner strength to handle all it might entail. So when we discovered at his birth that he had Down syndrome, I didn’t know how to react.

And then I thought, so what? Really, so what? He’s a baby who needs to be loved. And fed, and washed, and dressed — just like my first-born. Just like any other child. And then I thought more — what is a parent’s role? To me, it is to love their child unconditionally, to help their child find happiness and fulfill their potential. So really, it shouldn’t be any different between our two children. No one knows what the future holds for any child.

That’s hard to remember when you see the “pity” in friends’ faces and listen to them stumbling over what to say when you tell them the “news.” In the early days I found it so much easier to talk to the medical professionals who were caring and empathetic. They gave us more time to talk than those closer to us, who didn’t know what to say or do. I found that hard. Sometimes, if I’m honest, I still do.

There are more visits to the doctors and hospital for check-ups for my second-born. We have to watch the texture of his food and make sure he has his reflux medicine at the same time every day so he is not in pain. We have regular physiotherapy, and speech and language sessions. But many of these things, I remind myself, we could have with a child without Down syndrome.

So, what’s my point? Why do I feel the need to write something? Because for me, nothing in the media is capturing what the introduction of the new U.K.-wide test for Down syndrome is really about. Who has decided that those with Down syndrome should be singled out? And why? More worryingly, is this just the beginning? What about those with other diagnoses? And then what?

Diversity, in all its shapes and formats, should be embraced, not screened.

I have no idea what the future holds for us. All I know is that I have two children, and both make me glad to be their mother.

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Image via Thinkstock Images

Originally published: November 15, 2016
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