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Can it really be 60 years?

Can it really be 60 years?

When I read Louise Cross’ excellent article in the summer issue of GUCH news I knew I just had to write something. It also reminded me that, as Louise did, I should celebrate the superhuman achievement of the wonderful people and the technology of the NHS that has brought me to the age of 66 despite the odds of surviving childhood having been incredibly slim.  

I was born a "Blue Baby" with Fallot's Tetralogy and a hole in the heart, and at the age of five I could only walk about 50 yards before getting breathless and would constantly squat to rest. On my 6th birthday, Sir Russell Brock carried out a pulmonary valvotomy (to correct a narrowed heart valve), known as the "Brock Procedure", as hole in the heart surgery could not be carried out in those early days. I had to wait until I was 14 when Sir Russell (under my physician, Dr Paul Wood) carried out a secondary total correction. Prior to the operation my symptoms included fainting when standing for any length of time, and this improved post operation.  However there was a serious setback 24 hours after the surgery when I went in to rapid tachycardia (a fast heart beat) and needed a tracheostomy (where an opening is made in the windpipe) and a mechanical respirator. About 14 days later the right lobe of the lung collapsed and I was opened up again to rewire the sternum. I was eventually discharged four months and nine days after being admitted.

Exactly one year later, when I was beginning to get over the operation and gain some confidence, I was playing with a friend at school when he punched me on my chest. I went into rapid ventricular tachycardia at about 300 beats a minute with loss of blood from a haemorrhage (the cause of which still puzzles me and does not appear in my old medical reports). The local hospital in Northampton could not regulate the heart, and after a few days I was rushed to London in an ambulance.

After initially being sent to the National Heart Hospital, I ended up in Guy’s Hospital in a children's ward and, it being near Christmas, I remember from my semi-conscious state, that the children had decorated the ward with large letters saying "Sir Brussell Rock". Being an inpatient in the festive season was a fun time. The wards were well decorated and there were carol singers and even Father Christmas would visit us. The nurses and doctors got into the spirit of Christmas and there were plenty of presents.  As long as family could visit, it was not a bad place to be for Christmas. I am sure it is much the same today but perhaps with more digital presents than clockwork or toys on display.

By some miracle, Sir Russell, who was a consultant at Guy’s as well as being my surgeon at the Brompton, just happened to walk by my bed one day. Apparently, he was furious that he had not been told of my deteriorating state and immediately ordered a cardioversion (a brief shock is given to restore normal heart rhythm). I remember quite vividly two large pads being placed on my chest and nothing else apart from suddenly feeling well and hungry. I am not sure if I was the first to undergo the defibrillation procedure but when I was referred to Dr Jane Somerville in 1993 the report said that " was such a novel treatment at the time…”. I will always remember the amazing “luck” of Sir Russell Brock discovering me and giving me such a wonderful ‘gift’. I think Christmas is all about the miracle of Christ’s birth but that day I was giving thanks for my own re-birth!

Being born in the middle of a family of nine children in rural Northamptonshire I suppose it was only natural I should find independence was a useful asset to have. My many train journeys to hospital in London hold a mixture of memories. On the one hand I have pictures of looking at steam trains out of the windows but they are always mixed with an element of fear over what I might have to go through in hospital.

In those days, injections, removing stitches and drainage pipes, cameras to the heart via the nose and the various necessary procedures are all pictures which represent those early fears and have remained with me but I now see all these things as being positive. I think my most happy memory after coming home from hospital when I was six years old was the sight of a birthday present waiting in our front room with the sun shining on my new model farm!

My independence stood me in good stead during those times away from home. I had relatively few visits, with mother looking after the large family and father working hard but I was quite happy with the friends I had made in hospital. I remember one particularly outstanding German nurse we called Sooty, who was quite strict but was such a caring and fun loving lady that she still stands out in my mind from those early days. I often wonder what happened to her.   

It might be worth mentioning how my siblings treated the slightly unusual circumstances around their brother. My five younger siblings were either not born or were very young when I had my operations and remember little or nothing about them and the eldest had left home by that time. However, my elder brother and sister recall a few stories.  I never thought of either of them as being religious but found it interesting that my sister recalls saying prayers for me during the crisis times, and my brother tells me that he remembers the day of my first operation in 1954, standing looking at the night sky and saying a prayer for my survival.  He says that he saw a dazzling light in the sky and took that as a sign I would be alright. My brother would carry me on his shoulders on some of his walks when I would be short of breath and blue, and what now seems to be a short walk for me seemed a long adventure in those days.  He tells me that he remembers the incredible devotion and resolve of my mother towards me and although I know my father was not so available, I was always conscious of the fact that he worked very hard to keep a good house and large family in order.  

My big sister visited me in hospital on occasions and recalls that, as we had no telephone, there were urgent calls to the local butcher from the hospital to get them to pass on messages that I was perhaps in a dangerous state and asking the parents to go to the hospital.  She also reminded me that I used to have regular visits from a priest in the Brompton Oratory who became a good friend in my early days but I can’t remember his name. My sister brought back something I had forgotten which was that after my 1961 operation I had a picture in the local newspaper of me with a garden spade under the heading of something like “Miracle Boy”!

Overall, living with CHD and siblings, I found on the one hand having a CHD kept us apart in the sense of not being able to play games and so on together, but on the other hand brought us closer together in perhaps a more meaningful sense. 

As I grew older I realised that I had to be sensible about my activities, although the doctors still did not always agree with what I did.  I remember asking one consultant if I could help the farmer with hay-making one year and was told yes, as long as I didn't pick up any hay bales. I had been doing so for quite some time without telling him! My general lifestyle was to do as much as I could but without being excessive. I never did sports at school but when I left school I did start playing tennis and even learnt to ski, scuba dive and do various other activities. I have been vegetarian for about 35 years, drink very little alcohol and try to eat and drink whatever seems good for the body. My basic philosophy is to take responsibility for my own wellbeing and to cooperate as best I can with the many professionals along the way.

I feel very blessed that during the majority of my life because I have been able to do most things that were important to me. During my childhood my ambitions were to walk like other children, play chess and to swim, all of which seemed unlikely at the time. As I started work I began to realise that there was no limit to my dreams and, although many were not achieved, many were, and there are still a few to go!  In my home village in Northamptonshire I started a tennis club, became involved in various conservation organisations and eventually moved to London and trained as a solicitor. I deliberately maintained my independence in my own firm and, over the years, took several adventurous sabbaticals around the world, including trips to India and two years in Sydney in 1995 obtaining an MA in Conflict Resolution. Throughout all of this time there was always some irregularity in my heart but nothing to cause concern. I have a letter from Mr Lennox, my consultant surgeon in 1991, who just before I set off on a one year world trip said " ...there does not appear to be any reason why he should not lead a normal life including diving". At this time I was a trustee of a dolphin education organisation and enjoyed some of the projects including a successful rehabilitation programme of captive dolphins and quite a bit of swimming with them in different parts of the world.

By 1997, at 49 years of age, arrhythmias were affecting me and I was being examined with cardiac catheterisation and angiograms to try to establish the cause. I was experiencing these with supra ventricular tachycardia but I could control them by deep breathing. Although the tests showed moderate to severe pulmonary regurgitation Professor Somerville felt that valve replacement was not necessary at this time. I had been given the option of taking drugs at various times but I always expressed a preference to avoid them if they were not strictly necessary and managed to do so until 2005.

In January 2005 I was feeling fit and was walking fast up hill to the local shop when I went into ventricular tachycardia in the street. A car stopped and took me to the local surgery and I ended up in Northampton Hospital having another cardioversion. As a consequence, I had an ICD (implantable cardioverter defibrillator) inserted and was put onto a Beta-blocker and aspirin. The following month, under my consultant, Professor Gatzoulis, a homograft pulmonary valve was put in and I had an aortic valve repair and right ventricular resection. I had been cooperating with doctors on research projects at the time and took advantage of this by requesting a video of the operation which I now have. However I don't think that I will be putting it on YouTube! Over the last year I seem to be having some negative effects from the years of beta-blockers so have come off them. Apart from some irregular heartbeats and juggling with pacing settings, all is well.

I would just like to express my eternal gratitude to the whole Brompton team who have done such marvellous work on me over the last 60 years and can only say that the NHS, which came into being the year I was born, has ensured that I have had, what I consider to be, the most caring, pioneering and expert surgeons and teams in the world! A very Happy Christmas and healthy New Year to all.

By John Hunt

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