Tom's Story

Tom is the host of Tom's Hirschsprung's Podcast which shares stories about the remarkable experiences of some of the most inspiring people around Hirschsprung's disease. He shares his story with us.

I was born a happy and healthy weight, no immediate issues detected, and everyone assumed everything was normal, the only minor issue was that I was slow to feed, but again nothing to be concerned about.

Life started to change around 2½ weeks old as I started to become drowsy and was not feeding, my condition deteriorated rapidly, and I was rushed to my local hospital where they decided that I needed to go to a larger regional hospital, as I needed more specialist treatment.

My Hirschsprung’s diagnosis was made in the larger hospital and an emergency colostomy operation was performed. Due to the severity of my condition I was placed on life support with a poor chance of survival/recovery. The major issues were sepsis and severe tachycardia – the medical term for any heart rate over 100 beats per minute, which was effectively causing my already weakened body to be at risk of a cardiac arrest.

My life was saved by a junior doctor, who had recently read in a medical journal that a shot of magnesium sulphate through my IV could reduce my tachycardia, this is now a well-known way of reducing a heart rate, but in 1992 this was completely new information, this was thankfully approved by the lead surgeon, and it had the desired effect.

My pull through operation was made after 9 months at Great Ormond Street as well as my first stoma reversal, after that an ACE Malone stoma was introduced at 9 years old and reversed when I was 23. I have had 10 operations in total and I’m not due any more and apart from minor health issues from time to time I lead a ‘normal’ life.

Throughout my childhood, every weekend revolved around sport, football in the winter and cricket in the summer, these would sometimes overlap, and I’d have to choose on the day but if I could get away with playing both on the same day, I would.

I would never let my Hirschsprung’s stop me from doing what I loved, I’m not saying this is the case for everyone with HD, but I was fortunate enough that my parents were very supportive of me and my 3 brothers trying any and every sport possible, and physically my pain barrier was, and still is, ridiculously high!

After the Ace Malone surgery at 9, I was the first person worldwide to try a ‘stopper’ invention, (see image below) where the small soft plastic stopper would be inserted into the stoma to try and keep the area open, ready for the bowel washouts. I would place a Tegaderm (also see below) over the stopper and stoma to try and keep the stopper from escaping, however this was unsuccessful.

I would continue to play a high level of both football and cricket, until my ninth surgery at the age of 12, where my adhesions from previous surgeries were causing me significant pain, they were operated on at Great Ormond Street and the pain subsided. Unfortunately, this was the only time my Hirschsprung’s stopped me from playing football as I missed a cup semi-final, as disappointing as this was at the time, I was back playing in 3 weeks and continued until my retirement at the age of 18 due to non-Hirschsprung’s related injuries.

Throughout my career I was lucky enough to work in professional cricket, working with players that would gone on to play professionally and a couple that currently play for England, and football in a coaching capacity and continued this until founding my own cricket development company a few years ago, where I can reach a more worldwide audience.

Within the coaching career I had my tenth (and hopefully final) surgery at the age of 23 where I had my stoma reversed in the form of an appendectomy as the washouts hadn’t been needed for the last 8 years. This was a straightforward day surgery that I could have at a local hospital, rather than travelling to London.

I hope this gives more context to the man behind the podcast and please feel free to DM any questions and I’ll answer them as best I can.

You can find Tom on Instagram, listen to his podcast on Apple and Spotify or listen to his podcast episode with Ella.