Hello, my name is Tom. I was christened Thomas Charles Davies, so I am sometimes called “TC”. I was born on 1st December 1969 with a heart condition called Tetralogy of Fallot. It sounded very posh but it didn’t mean a thing to me. If they have explained that I was a blue baby, with holes in the heart, with only one lung working properly, and with an abnormal pulmonary valve, I still wouldn’t have been any the wiser. Nowadays, when I get out of breath, I come out with puns like “Aorta know better”.
At the beginning it was a simple case of hanging on. I was good at that. My heart and I worked overtime – all the time. My mother was brilliant and calm, my sister cared for me and my dad went to work.
It all went a bit wrong in 1970, when I was 8 months old. I had a serious stroke. It made me “right-side hemiplegic” – more fancy names. The stroke also did some brain damage and it limited my right field of vision in both eyes (I’m a bit like a horse wearing one blinker on the right).
After the stroke and five weeks in a sort-of-coma in Lincoln’s St George’s Hospital, they decided to send me for heart surgery in London’s Great Ormond Street Hospital for Sick Children. Mum and I went in an ambulance, and she said it was an exciting 4-hour drive. But she didn’t have any windows to look out of and they didn’t use the siren or the lights. I don’t remember a thing, but I obviously didn’t miss much.
An American surgeon did my palliative operation – a Waterston Shunt. This was to keep me going for a few years until I was strong enough and big enough to have a more complex procedure. He was the first of an international sequence of surgeons, specialists and experts who have kept me going all of this time. Great Ormond Street is a fantastic pioneering and teaching hospital and at its core is teamwork. I went in blue and came out pink.
In 1977, back in London, Mr De Laval, the Belgian surgeon, did my really major heart operation. He was new at Great Ormond Street at that time, but he eventually became the hospital’s most eminent head. The procedure took over eight hours, and my parents had to stay the night. They were amazed to see how I appeared the next morning, in intensive care. Like the other patients, I had wires and tubes going in and out of me everywhere. I was in an oxygen tent, and my machines and dials bleeped regularly. I stayed there with my eyes tightly shut, trying to keep myself to myself. But when my dad whispered: “Hi, Tom! It’s Mum and Dad.” I nodded very, very vigorously, even though my eyes stayed shut. My parents were astounded and overjoyed. I felt really good in there – brilliant teamwork again. Within a few weeks I was ready to be launched back into school and the exciting process of growing up.
Nearly all my schools were part of the Spastics Society (now called SCOPE). They were excellent and we would have so much fun. On most evenings, at Tixover Grange, near Stamford, we little ones came down in our dressing gowns for cocoa before going to bed. We then sat round the table and played cards of dominoes. What a great way to learn numbers! I also started learning to swim there, in circles at first because my right arm doesn’t work.
My career has been in horticulture since 1987. I live and work with SCOPE in beautiful Dorset. My parents retired to a village four miles from me, while my sister also lives nearby. I have plenty of hobbies, like quiz nights, Eddie Stobart Club, going to air shows; following motor racing and I play skittles in the local league (a sport which only needs one arm). I also enjoy swimming; I competed successfully at national level in both sports when I was younger. My swimming is steady, not speedy. I still swim as a charity fundraiser. But I do have to pace myself. If I don’t, my body says “Stop, I can’t keep this up!” Then I have to rest completely, sometimes for days – but that’s OK. I also have a condition one notch down from being Bi-Polar. It has a special name, which I can’t remember.
When I was 31 years old, in 2001, the heart specialists said that I needed to have a pulmonary valve transplant. My old valve would probably only last for two more years, they said, whereas a “new” one might give me another 15 years or more. But there was a significant risk with the operation, they added, so what did I think? “Let’s do it, no hesitation.” I said. My decision!
The operation took place on 20th November 2001. I was in surgery for several hours at the Royal Brompton & Harefield Hospital in Chelsea. It took so long, as we expected, that my parents were told to take a break and get some fresh air for a couple of hours. My mother grew up in that part of London, so they went for a walk and prayed for me at nearby Brompton Oratory, next-door to the Victoria and Albert Museum. The operation was successful, but I did have a serious, temporary setback, while still at the hospital.
It was my sister who helped me to start properly recovering after the unexpected problem. I had been sent back into intensive care on the second day after the surgery, because I was hardly eating or drinking anything and my breathing was very shallow. When Sarah was leaning over me and trying very hard to persuade me to have at least a sip of water, she heard me murmur through my oxygen mask:
“I wouldn’t mind a Diet Coke.” She quickly got cans from the machine in the restaurant, and the rest, as they say, is medical history. 2001 was a key year!
Life went on as usual after that, with lots of horticulture (my job), including working on our SCOPE stands at annual shows. I have also visited the Eden Project, where we did some of the planting, and some Chelsea Flower Shows. I go on holiday at least once a year, often with my family to Scotland, Wales and even the South of France. We always try to visit Grand Prix Circuits (we went to the British Grand Prix at Silverstone one year) and we have actually driven round the circuits at Spa and Monte Carlo – not on race days!
Then another milestone came about. After my annual heart check in December 2014, the specialist team at The Royal Brompton suggested and recommended that I should have an ICD fitted. Once inserted it would constantly monitor, control and modify my arrhythmia and give me a shock if it detected imminent heart failure! In April 2015, we had a full consultation and preparation for the operation.
“What exactly is an ICD” I asked.
“It’s an Implantable Cardioverter Defibrillator.” They said. “It is fitted under your left collar bone and wired to your heart in several places. It is about the size of a small mobile phone. The battery lasts for about 15 years. It’s easy to fit, we monitor you and carry out corrective ablations while we are inserting it, and the operation should be completed within a couple of hours.”
I replied with “You think I need it. So let’s do it!”
The whole team and my family nodded. I had the operation two days later; my surgeon was a German lady – Sabine Ernst. It was Wednesday 22nd April 2015 and I was home by the weekend. As a bonus, I have an ICD monitoring unit by my bed, like an old telephone without a dial. It transmits my heart rhythms to The Royal Brompton automatically, every night, from midnight to 5am, as long as I am in bed. How cool is that! And it hasn’t slowed me down, so life goes on as normal with no restrictions.
On 24th June 2016, I did a charity swim for SCOPE, and my ICD didn’t even notice. On 17th September 2016, I attended The Somerville Foundation’s Annual Conference, this time in Leicester. The Somerville Foundation is a small but vital and nationwide charity. I have been to at least 5 conferences so far, always in different locations, where my family and I pick up the very latest international and local area thinking on heart conditions. All conferences have been great; it’s so important that we meet face-to-face and see the experts face-to-face.
If they ever dissect me they will probably find that I am 50% caffeine-free diet coke, 25% heart, and 25% spare parts. But I’m not ready for that yet; I’ve still got lots to do. So if you ever feel blue, just take heart, like me. Life can be brilliant when everyone pulls together. Life is family, life is teamwork, life is friends and life is love.
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