Tuesday, 22 January 2013

The plight of a down syndrome baby

As a woman in her late 30’s trying to fall pregnant, I’ve always been aware of the risks of having a later pregnancy. They are numerous and varied, but to be honest, down syndrome has always been the one most present in my mind. I remember as a child teasing a down syndrome boy who use to catch my bus. Of course, as an adult, I would stand up to such things now, but as a 13 year old, I succumbed to the mob mentality. But knowing how I treated that boy, I wonder if I could face the prospect of having a baby if it had the extra 21st chromosome?

I waver on this debate all the time and my husband does too. It’s a tough question to answer and one I think you can only answer when faced with it. I recently read a story about a woman who terminated her pregnancy because she found out there was a 1 in 72 chance the baby had down syndrome. I am not judging anyone's decision, and my intent is not to offend anyone who may have had to make a similar decision, so please know I only speak from my own point of view. After loosing a child, I don’t think that’s a risk I could take. Would I make the same decision if it was a 1 in 4 chance? I'd like to think not but I don't know. The thing is we all need to make our own decisions when faced with such news and we will all have our own number that will be the cut off for deciding one way or the other. 

As I muddled this over in my head, I came across this amazing website – Noah’s Dad.  Noah’s Dad is Rick – who along with his wife, decided to share their story of being parents to a boy with down syndrome. It’s a truly inspirational blog in which he shows how “normal” their life is, how special their little boy is and the joy he brings into their life. He also shares a 1 minute video diary so you can see that Noah does normal baby things!

I particularly love his latest post where he talks about the specialness of down syndrome on National Sanctity of Human Life day. Sadly, I wasn’t at all surprised to know that 92% of down syndrome diagnosis ends in termination. As his friend commented “people with down syndrome have been targeted for extinction.” Those words resonated with me so profoundly because I felt they were true.  

I cannot imagine the pain and conflict parents would suffer in making the decision to terminate or not.  I can appreciate they would feel like a ping pong ball going back and forth, weighing up the pros and cons. They would wonder if they were capable of dealing with the issues. They would wonder if they were strong enough to cope with seeing their child in pain. Some would prefer to suffer rather than watch their child suffer. It’s a situation that does not provide a black or white answer and one that would be the hardest of many people's lives. 

However, Rick makes a great point when he says “Lets face it, all of our lives are train wrecks in some way. We all have flaws, issues, hang ups. We’ve all caused our parents headaches and heartaches at some point in out lives.” After reading this, I realised that none of us are perfect. There is not one single person on this planet who was a perfect child that became a perfect adult. I’m sure even Mother Theresa gave her mother a moment of grief at some stage in her childhood!

Look at those children who grow up to rape women, massacre school children or steal to feed drug habits. If their parents knew that’s what they would grow up to be, would they have terminated them? I wounder what Adolf Hitler's Mother would have done if she knew what her son would become? I know these are ridiculous hypothetical questions but the reality is we all have challenges to overcome in life and my challenges are no different to your challenges. It is just our own experience.

I applaud Rick for being a crusader on this issue. He is out to change people’s mind and mine has been changed. I look at the beautiful photos of his little boy and I don’t think Rick is unlucky to have a down syndrome baby – I think how lucky is he to have a beautiful, healthy little boy. And I think how lucky Noah is to have such a loving and strong Mum and Dad. My main aim as a parent is to love my child unconditionally. I know that can be a challenge at times but like Rick, I will do my best to stand up for my child, always advocate for my child and always be my child’s biggest fan! If I don’t, who else will?

PS - I wanted to post a photo of a beautiful, happy and smiley down syndrome baby on this post but my normal photo site didn't have any photos of down syndrome people. Their lack of recognition is for another post!


  1. Thanks so much for writing this, I really appreciate the kind words. Keep up the great work!

  2. Thanks Rick! You too!



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