A world without Down Syndrome

I watched a thought provoking BBC2 documentary this week titled “A world without Down Syndrome”. The documentary, by actress and mother Sally Philips, explores the ethics of prenatal screening for Down Syndrome and the reality that in the UK, in 90% of cases where Down Syndrome is detected during pregnancy, the pregnancy is terminated.

As prenatal screening becomes more widely available, more and more women will make this decision and future generations will see very few if any new births of babies who have Down Syndrome.

It’s quite ironic that this is all happening at a time where people with Down Syndrome are achieving more then ever before. But the fact is that this is part of the problem. As people with Down Syndrome live longer then ever before, the perceived “burden” is for life.

As the besotted parent of an amazing little boy with Down Syndrome, I am not an objective contributor to the ethics debate. In fact, I watched the documentary with a box of tissues in one hand and the remote control tightly wedged in the other. Because of course, I personalise the debate. I cannot imagine my world without Noah. I cannot accept that the life of my clever, cheeky and funny little boy is worth less then that of his friends in preschool, in the playground or at his swimming class. I can’t accept that his life is worth less then that of anybody else’s child.

It is very difficult for me to accept that so many women, faced with the choice, would choose not to have a child like mine. But it also makes me very sad that so many of these women do not know what they are missing out on.

People do not choose to have a child with Down Syndrome. I did not choose it either. If you had asked me 5 years ago if I wanted a little boy with Down Syndrome I would have said no. I would have said no because my perception of the journey it would take me on was so far away from the experience I have had over the last 4 years. I could not have imagined that a child with Down Syndrome would bring me so much happiness, love and laughter.

So why are our perceptions of Down Syndrome so far away from my experience?

It certainly does not help that women who discover prenatally that their baby has Down Syndrome are encouraged by professionals to terminate their pregnancy and try again. In the UK, it is legal, right up to the birth of your baby, to terminate a pregnancy if Down Syndrome is detected. It is considered a severe disability.

In my own experience, I did not discover Noah has Down Syndrome until after he was born but even then, a medical professional suggested to me that I should have another baby as I did not have the one I was expecting this time.

I remember bringing him into the nurses station at 2 days old to have his BCG administered. All the new mums were there with their “perfect” babies. The nurse lifted every baby up and introduced them to the room, commenting on their beautiful features, their cute smile, their lack of hair. She did not lift Noah. She did not make a cute comment. She left me heartbroken with this one gesture.

If only I had known back then that I was the one leaving that room with the most amazing bundle of joy. But I know better now. Noah has never been a burden. On the contrary, he brings so much joy not only to our lives but to all of the people around us. He is so much more then a diagnosis of Down Syndrome and our world is most definitely a more compassionate place with him in it.

I believe in choice. That we all have the right to choose our path. I believe that people need to make decisions for themselves and live with those decisions. But I also fear that in a world where we are presented with more and more choices, we are not armed with the toolkit to make good ones. I fear for diversity, for acceptance and for compassion.

I have never been somebody who places too much value on being like everybody else. I don’t want to live in a beige world where everybody is the same. I quite enjoy the fact that my family is not like everybody else’s. I feel very lucky that at a time where less and less people choose the path we have found ourselves on, I get to experience the highs and lows of an incredible journey. I can’t help but feel saddened that so many people will miss out.

 

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