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What kind of world do you want to live in?

My daughter has a wonderful friend who she’s known since infant’s school. She is full of character, passionate about fashion, has an amazing smile and has one of those hugs that just makes you feel like you could conquer the world.

She also happens to have an extra chromosome that means she has Down’s Syndrome.

I remember when I was pregnant with my son having a conversation with my midwife about the new blood test which told you whether you were at high risk of having a baby with Down’s Syndrome. We were debating whether we should take the test or not & my Midwife asked me what we would do if the test came back saying high risk-would we have the amnio? My husband & I had already discussed this & because of the extra miscarriage risk had decided we wouldn’t. “In that case” said my very sensible midwife “why bother having the blood test?”

Now I’m not criticising anyone who decides they cannot cope with a child with Down’s Syndrome. We all have to make our own decisions & I think we’re too judgmental as a society as it is but I do have an issue with how Down’s Syndrome is generally portrayed and even more so with how it’s presented by the medical profession. I genuinely believe this can mean women, at a highly emotional point in their lives, may not be as informed as they could and should be.

If you didn’t watch “A World Without Down’s Syndrome” by Sally Phillips when it was broadcast you missed an incredibly thought provoking programme. I had seen the media coverage of the new test available for Down’s Syndrome but I hadn’t given any thought to the potential repercussions. In Iceland where all women are offered pre-natal screening for DS 100% abort their children if the test comes back positive. That means there hasn’t been a child born with DS in Iceland in 9 years.  As the new test is made available in the UK we could be facing the same outcome.

Now if someone had said to me when I was younger “we can eradicate Down’s Syndrome” I would have seen that as a positive. It pains me to write that now but before we knew Katy and had a better understanding I only had society’s portrayal of DS to base my judgments on. That portrayal meant I saw Down’s Syndrome as a disability whereas now I see it as a difference.

I can almost hear you asking “But aren’t people with Down’s Syndrome more likely to have health problems? Aren’t they slower to develop intellectually?” Yes that is true but I genuinely believe we need to challenge what we see as “normal.” We all learn at different rates for all sorts of reasons & having a baby without DS is no guarantee they won’t have health problems.

Katy would be a different person if she hadn’t been born with that extra chromosome & you know what? Our world would be a sadder place for it. So if you, or someone you know, takes the test and is told the baby is at high risk of having Down’s Syndrome please be as informed as you can be before you decide what to do. Talk to families who include individuals with Down’s Syndrome, talk to the individuals themselves. At the very least watch this TED talk by Karen Gaffney before you make a decision:

As World Down’s Syndrome Day approaches I am thankful that my daughter has such an amazing friend as Katy & that Katy is all that she is-including that extra choromosome.

 

  • Emma Liesker-Gooch

    I love your blogs but this is my favourite! 🙂
    Thank you for writing such an honest and thought provoking blog.