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

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.

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock Images

Find this story helpful? Share it with someone you care about.

Related to Down Syndrome


Lessons From My First Year in 'Holland' With My Daughter With Down Syndrome

One year ago this morning, I embarked on one of the greatest adventures of my life. I made sure I had snacks, extra clothes, some shower supplies, my camera, my phone charger, some makeup, slippers, my best friend, a brave face and the greatest of anticipation. We dropped off London and Nash with Grammy and [...]
Movie camera and film on wooden table.

What Viewers Learn When We See People With Disabilities Represented in Hollywood

This is a time to celebrate the lives of those diagnosed with Down syndrome. It is a time to celebrate the acceptance and inclusion of people with special needs. In the media, whether on film, television, radio or podcast, people with Down syndrome have rarely been seen, and not usually portrayed in a positive light. [...]
two sisters posing in their living room

How Viral Videos Shape Perceptions of People With Down Syndrome

Down syndrome is a genetic disorder resulting from a trisomy of chromosome 21. It presents itself with varying levels of intellectual disability, as well as physical attributes such as almond-shaped eyes, a flat nasal bridge, and sometimes heart defects. You might have learned these facts in a biology class. The average person’s understanding of Down [...]
young boy in pajamas

To Myself on the Day My Son Was Diagnosed With Down Syndrome

I constantly wish I could go back to that day. Sit down and talk to myself when I first heard the words “Down syndrome.” When the blood test came back, and then the amnio. I remember the gut-wrenching feeling like it happened just this morning. I was at work; it had been days since they drew [...]