Tonight’s BBC2 documentary ‘A World Without Down’s Syndrome?’ has already raised a lot of questions despite not having been aired yet and although my son doesn’t have Downs syndrome it is still an issue which affected me during my pregnancy and the issues surrounding it continue to affect me today.
If you’ve had a baby in recent years you will no doubt have been offered the test to discover whether your baby has the condition. You were no doubt terrified at the thought of the test being positive and having to make that terrible decision about whether to keep the baby or not. Maybe you considered not having the tests like I did for a little while when I was first pregnant but felt like it wasn’t something you could say no to?
I’m sure the tests carried out at my 12 and 20 week scan weren’t just for Down Syndrome but there was so much emphasis put on the outcome of the Down Syndrome element that none of the other conditions they were checking for were ever made clear to me.
Despite ‘passing’ the Down Syndrome test, my son was born severely disabled, he has cerebral palsy, a condition which was caused from a lack of oxygen prior to his birth. Something no tests would have shown but also something I was never aware of when I was pregnant. Maybe that’s a good thing because the last thing we want is pregnant women terrified of what could happen to their unborn baby for 9 months.
But if I was aware that despite the Down Syndrome test, William might still be born with other disabilities then perhaps I would have been more aware of the warning signs and my pregnancy might have had a different outcome? Maybe not, but I still feel there is a huge lack of awareness of other conditions regardless of whether they can be tested for or not.
One of the big issues this documentary has raised is the issue of abortion and the guilt of the choice. I’m sure had Williams condition been detected during my pregnancy then the advice from doctors would have been to terminate the pregnancy. That my baby wouldn’t have any quality of life and the humane thing to do would be to abort to save his suffering.
But the reality is that yes, William may be severely disabled, and on the highest end of the scale as far as his disability goes. He may be described as ‘suffering’ from cerebral palsy but he lives a life full of fun and smiles and rarely ‘suffers’ from anything apart from the odd cold.
Medical professionals delivering the news of a disabling condition during pregnancy immediately offer the solution of abortion and we are all conditioned to expect that to be an easy and obvious decision but the guilt comes regardless of which way your decision falls.
Choose to keep the baby and you face the guilt of them living with a disability and the knowledge that people will judge you for that choice. Choose to abort and you have to live with the guilt and the ‘what ifs’ for the rest of your life
My son’s disability wasn’t detected before he was born so I didn’t face that heart breaking decision but that has meant that I now have the opposite reaction to many of those I have been reading about recently.
Because I didn’t have to make that choice I am seen as an inspiration, someone who was chosen by a higher power to have a disabled child because I am ‘strong enough’ to deal with it. Comments like those drive me nuts. I am no better or worse than any other Mum, I am just doing what is right for my child and would do whether he was disabled or not. If there were a higher power deciding who could and couldn’t cope with a disabled child, surely their powers would be better spent ensuring these children weren’t disabled in the first place!
The one question that any parent of a disabled child, including me, hates being asked is “If you’d have known, would you have kept him?”and I’ve lost track of how many times I’ve heard this question, often with William in ear shot which I find so upsetting – just because he can’t speak doesn’t mean he doesn’t understand.
Why do people think it is ok to ask me that question simply because my son is disabled? Do they ask the same question to someone when their child is really naughty or causes them sleepless nights or to someone who has a child who grows up to be a criminal or a drug addict? I don’t think they would.
My answer is always the same. I don’t know. Because truly I don’t and I am grateful that I didn’t have to make that choice – if I had I know now that I wouldn’t have had the full facts on which to base my decision. Yes, I may have been told some of the medical facts (although a lot of that would have been guess work and presumptions) but the doctors delivering that information wouldn’t have known the important things about how his life might pan out.
They wouldn’t know he would love swimming, enjoy bike rides and reading books. They wouldn’t have known he would have the most infectious laugh and would find a lot of lovely friends both with and without disabilities. And they wouldn’t have known he would be one of the happiest children you would ever have the fortune to meet. They would have presumed that because he was disabled he would be miserable and sad and live a life not worth living. They would have been very, very wrong.
With the information I have now, of course my answer would be no. But I wouldn’t have had that information when I needed to make that decision so I don’t know what I would have done.
I also often get asked if I would take away his disability if I could and the answer to that may shock you because no, I wouldn’t. I would change the world so his disability isn’t such an issue and so that his life was as easy as ours. I’d change the language medical professionals use when describing disabled people and I’d remove terms like ‘suffering from’, ‘life limiting’ and ‘wheelchair-bound’.
I’d change people’s attitudes and I’d make sure everywhere was accessible to disabled people (including disabled toilets being suitable for all disabled people!). I would of course change the way his disability prevents him from doing things he might enjoy and I’d love to give him the gift of speech to make his life easier but I wouldn’t change him. If I did he wouldn’t be William would he.
Having a disabled child is seen as a tragedy that should be avoided at all costs but in reality things aren’t that black and white. Yes, it’s hard and tiring and is like living on an emotional roller coaster, but isn’t life like that anyway? Yes, we have tough days and life isn’t what we expected it to be but we also have the most incredible fun and we laugh till our sides ache and we have tears running down our faces.
Life isn’t black and white. It is a lovely shade of grey with hints of every colour of the rainbow and I’m glad my son got to be a part of it and, I am not pro-life or anything, but I do wish more people could know that when they are faced with heart breaking news and forced to make difficult decisions about their unborn baby.