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since May 2004

Hello folks. Some of you know me, but I doubt you know the story BEHIND me, so I thought I'd contribute.

My name is Simon Strong and I was born in June 1973, in Southampton, Hampshire, England.

In the minutes before I was born the Doc's monitoring me noticed that my heart rate was dropping, so my mum was given an emergency C Section, under a GA. As soon as they got me out, they found that some of my spinal cord was outside my body - a condition known as Spina Bifida.

So began an "eventful" life. I had my 1st operation at the grand old age of 17 hours old, to limit the damage to the bottom of my back, and to put everything back in, CLOSE to where it should have been in the 1st place. Soon after this, they noticed that my head was beginning to swell, sign of a condition called Hydrocephalus. This is where the body create fluid to bathe the brain BUT, unlike most people, the mechanism to absorb it again is missing. I was becoming the original Big Head! I joke, but if it hadn't have been for my skull bones not being joined, then I might have died.

Fortunately, the surgeons had a novel, but lifesaving answer to this. They put a tube (or Shunt) running from my Brain to my Heart to pump the excess fluid away.

When I was 4, my bladder had enough of pushing fluid down in the normal way and started pushing it up, under pressure back to my Kidneys. Back in 1977, the doctors only had one suggestion for my Parents, and that was a Urostromy, which I have had ever since. As I was so young when I had it, I have known nothing else, and so all the routines around it are just that, routine.

My Shunt caused me endless problems in my first 16 years, and I have had to have it changed about 80 times. My Uro gives me frequent kidney infections, but I have learnt to live with them. I've also had quite a few leg ops and other things, but only one Urostomy, thank heaven.

That may change, as I am currently researching a partial reversal to an Internal Uro pouch.

About 4 years ago, the best part of my life started when I met Azmat. She has Spina Bifida too, but to a worse degree. She can't walk at all, but I am lucky in that I can, although if I go too far I get really tired, so I tend to use a wheelchair most of the time.

I don't mind answering questions, so if you have them, please ask.

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