The aging spina bifida population

I was wondering the other day (well, it is what my blog is about) and it occurred to me that for the first time in history we have a relatively large number of people who are getting older who have spina bifida. I know that if you were born before the 60’s, the kinds of operations that they did to put spina bifida right were a bit hit and miss (if indeed surgery was an option). I have a friend 10 years older than me and all they did with him was stitch up the lesion on his back and keep their fingers crossed – he ended up paralysed, but most people older than him just simply didn’t live much past teenage years. Now I’m not saying that people didn’t survive, because a minority did, but now, with modern surgical techniques, you wouldn’t expect a spina bifida baby to have any less chance of survival than anybody else.

So, what am I trying to get at here? Well, babies in the 1960’s are now adults in their 40’s. They are about the oldest people alive who had surgery with the more modern technique (although the 60’s was still a bit experimental shall we say...!) and there’s no frame of reference as to what happens to these people as no one has (boldly) gone where they are going.

Take me as an example, I have scoliosis – that’s pretty common in spina bifida people – of course your spine has a weakness to start with so you might expect it. You might expect other neurological things too and they might deteriorate with age as things change for everyone as they get older. What about my achalasia? They say that is caused by the nerves to my oesophagus dying off. That’s neurological...is that to do with my spina bifida? Is it that nerves from my spine have wrecked my swallowing? Who can answer that, as we are all aging at the same rate and we are the trail blazers. Imagine that?

The odd thing is, that you might feel that it would be an idea to document all of this that is going on with my body and all those other people who are my age with spina bifida. “Document it”, I hear you cry (I did, I really did hear that) but you see, there’s really very little point...by the time the 70’s had come round the spina bifida operation was hugely improved. Babies didn’t have to wait until they were 3, 4 or 5 months old to have surgery; they were operated on the day they were born. By the 80’s nutrition had improved to the point where spina bifida was becoming rarer and in the 1990’s they started adding folic acid to bread and all sorts of things which reduced numbers even further. Now, it’s so much rarer – in 60 years time, there will hardly be any spina bifida population at all. Spina bifida will eventually become something only in history books (with any luck) and there won’t be any cases to pass knowledge on for.

It means that for a number of people born in the 1950’s, 60’s and 70’s, they will be a small population of aging spina bifida babies who will all grow old together (well, we all hope we will anyway), and will face unknown trails along the way but whose experience will be of no use to future generations. There’s an odd thing, isn’t it?