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We've come a long, long way... (since 1966)

Born the youngest of four in 1955, I was diagnosed with pulmonary and infundibular stenosis as a baby. My early childhood memories are of train trips to London to see my cardiologist Dr. Baker, and of a week in Guy's aged five for various tests and catheters. I remember long lines of cot beds, a strict regime, and parental visits of only an hour once a day.

ECGs were done with metal plates, gel and red rubber straps around wrists and ankles, red rubber suction cups on the chest, and a great deal of goo.

Often after an appointment in London my treat was to go to Trafalgar Square to feed the pigeons now I chase them out of my garden!!

My mother was advised to let me lead as normal a life as possible, and I experienced the normal rough and tumble of family life. Climbing trees, ladders, the garage roof etc was normal, and we had a zip wire down the garden that I used to hang on by my knees. I also did lots of headstands etc Mum's theory was that it got blood to my brain! When we went for walks we would race to the ‘winning tree' on the local golf course. I was given a headstart, but always lost as I ran out of breath halfway! My elder sister reckons Mum kept chocolate in her pocket to give me if I went blue, but I don't remember it! [I'm not sure what Mum felt it would do but doubtless I made the most of it!]

When I was about nine Mum talked to me about a possible operation on my heart. I recall that I was not keen on the idea! However I was taken to see Russell Brock, and plans were made for me to have surgery about a month before my 10th birthday. [I gather they waited until then to allow the bypass techniques and outcomes of open heart surgery to improve.] I recall Mr Brock seemed quite a shy man  not very tall, and with black heavy rimmed specs. I think he did talk to me, but I was on the fringe of the appointment assessed, but not included in the discussion!

Prior to surgery I had to have a month off school to avoid the risk of picking up any infections. My sisters were sent to stay with relatives for the half term in case they gave me anything - they were not impressed! I was admitted to Guy's a week before the op and had my own room with a basin on a private floor. I think perhaps it would have been more fun on a children's ward, but maybe it allowed Mum to visit more often. Maybe it also related to the risk of infection.

The week included lots of pre-op tests and x-rays, and, because I would be in an oxygen tent, I also had a physiotherapist teaching me breathing exercises. They told me they would chill my body right down, and that I would only be warmed up gradually. In the pre op preparations I recall being horrified when they asked if I needed a pubic shave (I was nowhere near puberty). I locked myself in the bathroom and refused to let the nurse ‘have a little look' to check! Then I remember being wheeled through the basement to the theatre on a trolley, teddy in my arms, staring at pipes in the ceiling.

Post op I remember waking with that horrid burning in the chest feeling of being ventilated. I was stark naked, freezing cold, and surrounded by huge machines. It seemed as if numerous doctors in white coats came and went, and I felt very self conscious. Once I was weaned off the ventilator, the oxygen tent was put on I thought it smelt funny. I also remember seeing my parents standing together looking at me (memorable as they had by then been divorced for over two years).

I had to lie flat for a week. VERY boring, no TV, just lots of books read by Mum, and probably ‘listen with mother' on the radio. Time was also taken up with doctors, nurses and physio (breathing exercises included trying to blow bubbles through a straw in a jug of water). I don't remember pain as a problem, and wanted to be able to do more than was allowed.

Week Two, I was allowed to sit up, but not allowed out of bed. The repertoire of activity could be extended to playing cards, battleships and squares on paper.

I think a teacher also came to see me a few times, but don't remember doing much work (obviously I wasn't that bored!)

Week Three, I was allowed to walk around my room pretty freely, and week four I could go down the corridor. I remember meeting another girl who'd also had a heart op, but have no recollection of her name or what surgery she had. That week I was also allowed to go in the lift up to the flat roof of the building, and recall loving the sunshine and fresh air.

Stairs were another issue - I practised a flight of stairs in hospital (closely monitored), but at home was only allowed to do one flight of stairs a day. If I needed to go up in between then someone had to carry me. Mum had moved a bed down to the playroom so I could rest when needed.

I was off school for the whole summer term, with a tutor coming in a couple of times a week. Again it was pretty boring, my siblings were at boarding school, and friends were only allowed if we were quiet (and they didn't have a cold). In fact when they came I was desperate for some action, so probably got them into trouble doing more than was allowed.

After about three months the stairs limit was off, and I was allowed to run short distances I vividly recall getting to the ‘winning tree' without being puffed, but I was still last!

About then my father took me on holiday to Jersey with my step family. I enjoyed lots of swimming and beach time, though I was fairly embarrassed by my ‘zip fastener' scar.

It was lovely just to be doing the normal things a 10 year old does but I was fairly regularly told off for climbing rocks, racing my stepsister, and generally playing up!

Returning to school in September I had to learn to adapt to the normal playground jungle. The nine months off had resulted in me being a bit precocious, and spoilt, but that soon rubbed off. It was good to be able to join in playground games and P.E. more easily.

Although I suspect the teachers kept an eye on me they did it fairly discreetly, so I didn't feel I stood out.

I think I saw Mr Brock a few times after the op, and he was given a baronetcy not long after, it became a standing family joke that my op had made him a ‘Lord. Now the valvotomy I had is known as a ‘Brock's procedure'.

Because of the limits of time on bypass and being chilled they did not deal with the infundibular stenosis until a later date. Mum decided not to tell me that she knew it would need doing- so it came as a bit of a shock to discover I needed more surgery when I was 20 [and training as a physio). The contrasts in post op regime were enormous I was walking up and down two flights of stairs after just four days!!]

Now, a physio in my fifties married, with two adult sons, it is possible I will need further surgery at some stage. If I do, I am sure that I will be amazed again by the contrast with 1966.

Sheila Watters

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