Stuart’s Story: 32 years and counting…

The following is a blog I first posted back in 2010. It’s still the only time I’ve put pen to paper and really opened up about my experiences with ABS. Since then I’ve read so many stories from parents about their kids being awesome; it’s through family support that you realise you’re just as important to society as everyone else.

Stuart

I’ve recently joined up to an ABS support group on Facebook. Surprisingly enough, it’s not the kind of ABS that Clarkson, May and Hammond crap on about once a week on our tv screens. In fact, rather that save lives this ABS has a nasty tendency to end them before a baby’s even had the chance to leave the womb. This support group has a mixture of ABS sufferers and ABS parents. As someone approaching 30 years with Amniotic Band Syndrome, I want to write something to share my experiences with ABS, and how it definitely should not stop you doing anything. I’m just not sure how.

I guess to start with I’d probably reassure parents – and mothers in particular – that it’s not their fault. Two years before I was born my grandmother gave birth to her fifth child (yeah, unusual family). When Sue was born Grandma only wanted to know that the baby was healthy and that it had ten little fingers and ten little toes. I’d imagine it was quite a shock then when Mum went to repeat the quote and discovered something a little different.

Thing is though, nobody’s quite sure what causes ABS. The first theory – and the way I explain what happened – is that at some point during the pregnancy there’s a rupture in the amniotic sac that surrounds the baby. This means the baby is exposed to very small fibres that can wrap themselves around extremities like hands and feet. Think of it like having a tight rubber band around your fingers: it’s kind of like that. The second theory is that there’s some kind of blood circulation defect.

So what causes that sac to rupture? No-one’s actually all that sure really. It’s not a genetic thing and it certainly doesn’t affect future pregnancies – I’m the oldest out of Mum’s six kids and the only one with ABS. All I put it down to is one of those things that happens from time to time.

I guess all I’d say to parents then is simple: It’s not your fault.

So what then would I say about growing up with ABS?

That’s a tough one. I could start by saying that some way, somehow, kids adapt. Despite being born with all fingers fused together on my left hand and only three affected on my right, apparently right up until I was 2 I was left-handed. No idea how I managed that. It’s something that still sticks with me today, most often when I put a coffee cup on the table then turn the handle around to my left. It might seem implausible to parents, but trust me, you don’t miss what you never had.

I could then go on by saying that to try and fix ABS deformities is not easy. For me it’s taken seven sets of plastic surgery at three different ages (two at age 2, three at 9, two at 16) to reduce the webbing down so each finger can move individually. I’d also mention that it hurts. Imagine your hand being caught in a vice for two weeks, throbbing so badly you so think that they’ve actually moved your heart from your chest to your hand, which, incidentally, you can’t use for up to a month. (On a completely unrelated topic, buying sporting equipment for a birthday that arrives while you’re still in hospital recovering is not a Good Thing. Couldn’t use that bloody cricket bat all summer…)

It would also be remiss not to mention that both sufferers and parents are going to get a lot of looks and a lot of questions. ABS isn’t all that common – about 1 in 1200 live births, with many of those of having mild deformities as a result. I’ve met tens of thousands of people both in Australia and overseas, and only know of one person with a hand resembling my own – and even then a sketchy memory tells me it was something other than ABS.
Because it’s not that common people will ask questions. Mum was often asked if she’d been on Thalidomide when pregnant with me; fortunately that particular drug was taken off the market back in 1961 as opposed to 1980. Kids will also point and stare, as kids are want to do. Where my three brothers just accepted things and got on with it, Mum’s youngest two – who are 18 and 21 years younger than me – often ask questions or want to have a good look. When I was younger this would freak me out, but now I’d rather people asked what happened rather than them come up with their own explanations (the one at boarding school where apparently my parents were cousins was the best).

I guess though the big thing I’d tell ABS sufferers is that it shouldn’t hold you back any. There are going to be times where something triggers you off and all you can do is sit there and wonder “why me?”.

I certainly used to do that. Still do sometimes if I’m honest, although that’s fading with age. It’s easy too to blame things on the fact that you’re different. Again, fading with age.
Sure, there are always things you’re not going to be able to do. I can’t join the Defence Force or police; I’m certainly not your man when it comes to getting and holding a round of drinks in a crowded bar or club!

I’d tell those with ABS how my parents actively encouraged me to get out and use my hands, to not feel like I was any different to anyone else. I’d talk about winning a piano competition at the Toowoomba Eisteddfod (trio, 1990 for those playing at home); working out a way of bowling leg-spin in cricket (for the uninitiated, something very difficult to do for anyone); playing National League indoor cricket in England (even if I did get the call-up in the pub the night before); and finally spending four years working as a tour guide in Europe, meeting and entertaining thousands of people, precisely none of which cared I had ABS.

I guess that’s what I’d say. Question is though, how best to write it?