“I am not here to change the world. I am changing the world because I am here”

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There are times that I wonder if perceptions will ever change. Whether the message is getting through. If blogs like mine really make a difference or not. Don’t get me wrong, it restores a little faith to know, that if one or two people every once in a while, look at this blog and page and perhaps don’t feel like having a baby with Down Syndrome would be the worst thing to happen to them… well, then perhaps the message IS getting through… slowly.

I posted earlier this week about the fact that if a woman finds out late into her pregnancy that she is expecting a baby with Down Syndrome, it is actually legal in the UK for her to have a termination up to 40 weeks. Not because this baby won’t live outside the womb. Not because this baby is expected to have little or no quality of life. Simply because they have Down Syndrome.

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I had talked about this previously and it was met for the most part with utter shock and disbelief. Now I’m not kidding myself here. The people that follow my page, are obviously going to be people that want to know more about Down Syndrome. Perhaps they have someone in their lives who happens to have Down Syndrome – a son, daughter, niece, nephew, grandchild, a friend’s child etc. These people are obviously going to be pro Down Syndrome and not haters… you’d have hoped.

But then, there in black and white as I scrolled down to look at the comments under this particular piece, was a few lines from a lady named Sally*. Sally had herself terminated her baby at 12 weeks because she had found out in her first pregnancy that she was carrying a baby who happened to have Down Syndrome. It’s not the first time someone has come forward, openly and honestly telling me, that they chose to terminate. I have in the past commended their bravery. I’m not altogether sure I would be man enough to confess, especially not to a woman who has a child with Down Syndrome herself but when they have, I have always said that I have respected their right to choose. Had I been in their position and we found out Oscar had Down Syndrome prior to being born, I genuinely don’t know how I would have felt. So I’ve respected their wishes and just thanked goodness, that I didn’t have that choice to make.

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But when Sally, the lady who’d come forward to tell me she had aborted her baby because she’d had Down Syndrome, went on to say that she had a 16 year old niece with Down Syndrome, my heart felt heavy. Really, really heavy. She said that Amelia* (her niece) had been ‘riddled with issues’ and that at best they could expect another 10 years before she passed away and even though this lady said she was devastated at the thought of losing her niece, the bottom line I got from her message, was that she didn’t want a child with Down Syndrome for herself.

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She went on to justify her reasons – She said that she couldn’t bear the thought of outliving her child and having to bury them. That she knew she wouldn’t be able to cope with the bullies. And that she’d find it heart breaking that she’d have to tell her daughter that she wouldn’t be able to have a child of her own.

I was puzzled. Did this lady definitively KNOW that her daughter would have health issues? Did she not know now that people with Down Syndrome are living longer, fuller lives and that perhaps her baby could have outlived her? Bullies? Really? I mean I understand the sadness not being able to have child might bring a person… But to terminate them on the basis that they might be sad they couldn’t have a baby? REALLY?

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We had a couple of messages back and forth and I asked her if it had been flagged up that her baby had had major health issues? I made the assumption that this must have been the case. I try desperately hard not to judge and couldn’t even begin to imagine the impact these health issues have had on her or her family but suddenly I was wondering how Amelia’s mother felt in all this. If she had her time again, would she have chosen terminate her now 16 year old daughter because she had been ‘riddled with issues’ or was this just Sally, looking at her niece and thinking, do you know what, I could do without that?

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She didn’t answer my question about whether it had been found that her unborn child had had major health issues. I am suspecting, as she didn’t answer, that there were probably none. She also went on to say that they tried again and now have an ‘amazing healthy child’, which lead me to believe that in making that statement, she probably considers a child with Down Syndrome, unhealthy. She said that it was her decision and she doesn’t for a second regret it. She said that she doesn’t ever tell anyone about any of this and that she was now going to delete the comments. Which she did.

I sat for a while at my laptop, thinking. I couldn’t work out why I felt so sad. It actually wasn’t about the termination. I fully understand that some people think they won’t be able to cope with a child with Down Syndrome. They’re scared and they don’t think they can handle it. I get that. But I think I felt sad mostly because she has someone with DS in her life and yet she still chose to make the decision she did. I think perhaps I felt sad because the very ethos of this page, is that if someone could spend just a few minutes in Oscar’s company, they might be swayed in thinking that actually, Down Syndrome’s not that big a deal and if anything, he’s a pretty cool little guy to be around. And right there, in black and white, she was dispelling that very notion.

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But also the ‘amazing healthy child’ was a statement that didn’t sit right with me. It felt like she was saying that a child with DS couldn’t be either amazing or healthy, which just isn’t true. It felt like she was saying that since having this ‘amazing healthy child’ she’d hit the jackpot and that, for some reason, hurt me.

One of her final messages to me was that once they found out she had tested positive for Down Syndrome, they had decided not to find out how severe it would be. In that very sentence I realised she knew very little about Down Syndrome, for most of us know there is no test that can tell you when a baby’s in the womb how severe a child with DS will be, any more than it can predict if Alfie or Flo will go to Oxford university or become coke addicts with no jobs and end up in prison.

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I told her I was glad she didn’t regret her decision and I wished her all the best. I had nothing more to say.

In The Times newspaper last weekend there was an article written about how parents of disabled children had cost the NHS £70 million over the last 5 years. The reason being was because, had they known of the abnormalities earlier, they would have had abortions. The bulk of the pay-outs were to parents who claimed that antenatal screening failed to warn them of the risk their baby would be born with a disability and therefore they made claims, due to the hospitals negligence. Now I don’t doubt that some of the hospitals were accountable for missing things in the screening or scans. I’m not denying that some of the people claiming have been through huge financial strain because of the extent on these children’s disabilities. But the article talked of parents of children with Down Syndrome and while I understand the initial feelings of needing someone to blame, once that baby’s been born, is there really a need to point the finger? Are the parents THAT cross that things MAY have been missed in the scans and screening that they go to these lengths? To me, it says these parents aren’t happy to have their child in their life. That they see them as a strain, as a burden or that perhaps they’re not wanted after all, and again, that makes me very sad.

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So there are times, like when I read the article in newspaper and I hear from Sally with her 16 year old niece, that I wonder if my job (and many others out there) as an ambassador for our kids, is just too high a mountain to climb. If perceptions will ever really change, or if we’re just fighting a battle that can never really be won. I guess if we asked anyone outright if they wanted to bear a child with Down Syndrome for their life, I’m guessing I’d be met with a resounding no. But people currently in that life? People living with a child of their own, a sibling, a grandchild, a niece, a nephew with Down Syndrome? I’d have hoped they would say that the reality isn’t nearly as bad at all.

Dr Brian Stotko conducted a study (2011) and asked 2,044 parents who have a child with Down Syndrome some fundamental questions. 99% reported they loved their son or daughter and 79% thought their outlook on life was more positive because of their son or daughter with Down Syndrome (this 79% is a strong message that they weren’t just happy but that their life was MORE positive). Amongst siblings ages 12 and older, 97% expressed feelings of pride about their brother or sister. And only 4% of this parents surveyed, regretted having their son or daughter.

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Paul Shane Spear once said “As one person I cannot change the world, but I can change the world of one person”.

With every new parent of a child with Down Syndrome that finds themselves reading this blog or page, whether they find out in pregnancy or post birth, I’m pretty sure Oscar’s doing just that for them and if that’s all his does in his lifetime, well that’s more than I could ever have imagined. And the lady with her niece? I genuinely hope she’s happy.

* Names have been changed to protect identities

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3 comments

  1. Doreen Johnston   •  

    Sarah I’m a granny with a grandaughter who happens to have Down’s Syndrome. Our grandaughter is the most precious girl to us her diagnosis came post birth. It was hard and we were so worried but 4 years on…….we have the most amazing grandaughter who loves dancing, goes to ballet class is at mainstream nursery and is very much part of our life and her extended family.
    She loves life, her little brother and we love her. I cannot imagine life without, her keep writing Sarah because our children do matter and deserve a voice.
    I

  2. Renata   •  

    I have 8 amazing, wonderful, and healthy children. Only one of them has been blessed with that extra little bit of sparkle. Thank you for sharing your children with us and your positive view point on your son’s life. They are all blessings

  3. sarah mccaethy   •  

    Wonderful to watch this family live and love life…

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