A disabled inheritance

Emma Bowler, from London, UK, explores the question of disability inheritance, and the decision-making process on whether or not to have children.

Deciding to have a baby was probably one of the most difficult decisions I’ve ever had to make. There was not only the question of how on earth I would cope with the practical side of looking after a baby/child, there was also the uncertainty that being pregnant could affect me physically in the short or long term. Both these issues could be resolved with a bit of research. However, no amount of research could change my overriding dilemma – could I come to terms with passing on my disability to a baby?

Biological clock

I was born with a very rare disability called Kniest Syndrome, which is said to affect one in a million people. It basically means that I am four feet tall and my joints don’t have full flexibility, so I also have mobility difficulties.

For a long time I buried my head in the sand over the ‘passing on my disability’ issue, denying that I even wanted children, and claiming that my life was way too busy for kids.

The moral maze

However, as I got older, the biological clock ticked ever louder and I realised I was pulling the wool over my own eyes. I did want children but I just couldn’t find my way into the middle of the moral maze I found myself in – the fact was that if I had a baby I had a 50:50 chance of passing on my disability.

When I was younger I used to think that if I found out that I was going to have a baby with the same disability as me then I would just have an abortion. But I came to feel that would mean that I was basically saying I myself shouldn’t have been born. There’s no way I think that – and I’m thankful that my mother didn’t have access to the scans and tests that are available now.

The stupid thing is that, like many disabled people, I lead a full and happy life. OK, there were times when I felt I’d drawn the short straw (pun intended!) but generally I consider my life to be a lot more positive than many non-disabled people. I don’t mean that in a conceited way, but the one thing that annoys me is the way people look at me with that ‘God she must have a terrible life’ assumption in their eyes. The fact is I’ve always worked, I’ve travelled the world, own property, lead a good social life and have the most gorgeous partner. Indeed, what more could I want – children?

So, if I have a good life, why couldn’t a child of mine with the same disability also have a good life? I worried that the flaw in this statement was the fact that I am a product of my parents, where I was brought up and who I came into contact with – a whole set of happenings, coincidences and people. If I had a baby I couldn’t replicate all those things, so life could turn out very differently for them.

But the counter-argument was, who better to bring up a disabled child than someone who knows exactly what they are going through? Surely there has to be something in this?

However, in my worst nightmares, I would play out the scenario of my disabled teenager finding it hard to fit in with the dating crowd, turning round and asking me why on earth I had them knowing I could pass on my disability and causing this angst.

Someone once asked me if I had ever said that to my mother but the same scenario couldn’t have arisen because my mum doesn’t have my disability and didn’t even know she was having a disabled baby. In contrast, I would be knowingly taking that risk.

Disability inheritance

The question of disability inheritance affects quite a small minority of disabled people – between 1% and 2%. But I think it raises an interesting question about our attitudes towards ourselves: what would you do in the same situation?

When I asked my partner what he felt about my dilly dallying over the issue, he told me “How could I not love a baby with the same disability as you, when I love you”. That was a turning point for me and six months later I was pregnant.

It was at the 20-week scan, when all the bone lengths are measured, that the sonographer uttered the words I would have preferred not to have heard. “The femur length does seem to be a bit shorter than normal.” At this point I realised that I had flipped the coin and it had landed disability side up.

Disability is immaterial

Having spent years worrying about this outcome I was relieved to find that my initial upset was quite transient, lasting a week if that. We had gone into this knowing the probability and agreeing that, whatever the outcome, the pregnancy would go ahead. There was no going back.

Further scans increasingly confirmed that my baby had inherited my disability and my feelings turned from upset to protectiveness. What I did feel – and I still feel – is that it was definitely the right thing to do to find out while I was pregnant whether the baby had my disability because it gave me plenty of time to assimilate the information and come to terms with it, rather than have it as a ‘surprise’.

An abrupted placenta meant I had my baby by emergency caesarean early – at 35 weeks. He was immediately taken to special care, not because he was in any particular difficulty but as a precaution because he was premature. When I finally met him 13 hours later I just knew everything was going to be alright.

What’s incredible, over a year on, is the fact that even though Archie has my disability this is almost immaterial. He is just a wonderful, cheeky, happy little boy who we love to bits.

The decision to have our first baby took years; the decision about whether to have a second was unquestionable. Yes, of course we would!

Next: Good practice: perinatal mental health care