‘I Have A Handmade Heart’- Ben’s Full Story

My name is Ben and looking at me you’ll think that I’m just a normal average 18 year old lad from Cheshire, but that’s only for people who walk past me in the street. If you get to know me you’ll soon realise that I am everything but normal. Probably the most abnormal thing about me is the fact that I have a handmade heart.


In March 1996 I was diagnosed antenatally with Hypoplastic Left Heart Syndrome. I was born 6th August 1996 in Chester and within a few hours I had been rushed down to Birmingham children’s hospital. I had my first operation (Norwood stage 1) at the grand old age of 23 hours – one of the youngest ever! In December that year I had my second operation (Norwood stage 2) and in May 1999 I was in hospital for the supposed final stage; the Fontan. However, because it’s me, there were unexpected complications: after being home for a couple of months, I had to go back in hospital for 7 weeks,  just before the millennium, so my dad was stuck next to me in hospital while everyone else celebrated the new millennium (he reminds me every new year).  I then had 5 years of hassle-free life, so obviously we were thinking, “Brilliant, we made it finally!” But no, my chest clip broke in 2005 so I had to go in for surgery… again. Hardly ever happens apparently…

Another 5 years went by with no medical issues (a few catheters here and there), but then Dr Stumper suggested that I should probably have a pacemaker. Not a real need at the time but we thought that it would help my heart as I grew. So in August 2010 off we went back to Birmingham to have the pacemaker fitted. I was in hospital for 5 days, and two of those days I was in intensive care, high as a kite from the morphine they were giving me, so I felt great! Just under 2 weeks later I was back to school to start my GCSEs and hardly any of my friends had any idea that I had a pretty dramatic summer.

I sailed through my GCSEs no problem, but then A levels hit me and they hit me hard. The change in work and social expectations was tougher than I’d thought. I ended up re-doing my first year of A levels and it worked out a lot better: I fitted in the year better and the change of subjects was also a nice change. My results weren’t great though and I realised that perhaps A levels just weren’t for me. So I have now moved to West Cheshire College to study a BTEC Level 3 in Health and Social Care. It’s been a big change, going from a small school were everyone knew me, to a huge college were no one knows me. It’s full of strangers who walk past me in the corridors. No “Hi, Ben!” here, and there are only a few people who know anything about my heart condition. It was a new beginning; I was just another person on the course and it’s my chance to show who I really am.

I know that a lot of people find it difficult tell people about their heart condition. This has never been a problem for me because I realised that if people treat me any different after I tell them then they’re not going to be the best of friends, so I normally stay away from them. Luckily this didn’t happen when I told my college friends, so I know that I made a good choice.

People say that having a handmade heart must really suck, but strangely a lot of the best things that have happened to me have happened because my heart is handmade. Yeah I get tired easily and have operations but that’s not bad cos it’s my life and I’ve learnt to live with it. Having a heart condition can be great! It’s given me loads of opportunities that I would never have been able to do if I was “normal”. For example, earlier this year I spoke in front of some of the leading cardiac surgeons in the country and the world, about ethics and decision-making. How many teenagers have done that? I’ve been a guest at the House of Lords. I’ve got a Diana Award. I get special treatment when I go to airports (I now know “pacemaker” in 3 languages!) I would never had been able to do these things without the experiences that I’ve had thanks to my handmade heart.

I have a lot to thank Little Hearts Matter for. Their support over the past 18+ years has been amazing. The things I’ve done with them have been: amazing. The people I’ve met there: amazing. The friendships that I will have for the rest of my life: amazing. All of the things that I’ve done with LHM have massively boosted my confidence which has made me relaxed when public speaking and I hope it means that I’m good at getting on with all sorts of people too. The best thing though is that I know I’m part of a brilliant group of people who all either have a handmade heart or know a lot about it. It’s great not having to explain stuff about why you’re tired or cold and I can always find someone who understands when I’ve had a bad day!

I don’t remember much about all those operations and the time I spent in hospital up to being 4 years old. I’ve had a great time since though (mostly) and hope that whatever the future holds me, it will be: amazing!

Written by Ben (2015)

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