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Richard's story

I was born December 1st 1953 with Tetralogy of Fallot. My mother said I used to have fits where I would either stretch out straight or curl up in a ball and the doctor had to come out and give me injections to relax my muscles. I didn't start walking until I was 3 years old and even then, my first memories were walking about 20 feet and having to sit down because I was out of breath. I used to start to feel light headed and everything would look twice the size that it should be if I over exerted myself. I’ve since found out it was Alice in Wonderland syndrome (or Todd’s syndrome). I had loads of tests and X-Rays as a child but they couldn't find out what was wrong.

My mum would always take me to the doctors’ surgery in Danbury, and every time I was seen by a different doctor. But in 1963 I was seen by a Doctor Rossiter, all he had to do was put his hand on my chest and he knew exactly what was causing me all of these problems. I was referred to Hammersmith Hospital in London and underwent a number of tests. Due to the severity of my condition, one of the tests gave me a heart attack

My mum and I were told I needed as soon as possible... 18 months later we were given the appointment for the operation. Apparently they had forgotten about me and a doctor who was looking through my notes had noticed I was still waiting. Before my surgery I was told what was going to happen, they simplified it a little so that I could understand it at the age of 11.

The operation was performed by Mr Cleveland and Professor Goodwin on the 10th of June 1965, it took 6 hours 45 minutes to perform and I had a 50/50 chance of survival. They patched up two holes in my heart. All I remember from my surgery is waking up in the recovery ward with tubes everywhere. One of the most difficult aspects of the surgery was that I had to learn to breathe differently due to the fact that before the operation I used to breathe very rapidly. I remember the change in the colour of my skin as I always had a blue tinge and after it was the normal pinky sort of colour. 

I quickly recovered and was sent home 4 weeks later on Monday the 1st of July. As soon as I was home I noticed one hell of a difference I could actually run! 

Ever since then I have led a completely normal life I've had a full working life mostly doing hard manual work. I started out on farms and ended up in a factory loading lorries I also played football and almost had a professional career. My heart has been playing up lately but it's nothing major the repair is holding up.

I am grateful to all the doctors and nurses who helped me all those years ago as well as the NHS. The specialist I see at St Bart’s for my regular check-ups has told me that if I hadn't had the operation when I was younger I wouldn't be here and he was amazed that I've gone 50 years without any problems. 

by Richard Powell. 


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