‘I’ve Learnt To Live With My Limitations And Not Be Discouraged’- Andrew’s Story

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Hello people of the internet. I believe introductions are in order. My name’s Andrew and I’m an 18 year old regular guy living in the sunny seaside county known as Essex… Okay I was joking about the sunny bit… Although when I say that I’m a regular guy, I wouldn’t go as far as say that I’m a regular Essex guy… Oh no… I would much rather spend my evenings with a guitar and a cup of tea than a rave and a bottle of vodka. However, I do take drugs… Woah woah woah what?! Okay, prescribed drugs and for a very good reason. You see, from the outside,  I’m this regular, slightly socially awkward Harry Styles look alike. (Yes, I like 1D…judge me all you like…) but you see, What Makes Me Beautiful is not my hair or my spotty face, but the fact that I was born with a rare congenital heart defect called Hypoplastic Left Heart Syndrome.

Apart from this being a string of scientific lingo, at its essence, having Hypoplastic Left Heart Syndrome means that I only have half a working heart, and in case you haven’t guessed from the title, this affects the left side of my heart.

Let the science lesson begin: So the heart is made up of four chambers that work together to pump blood to the lungs and also to the body. The right side of the heart is made up of 2 chambers and receives deoxygenated blood from the body and then pumps this blood to the lungs for it to receive oxygen. The left side receives this oxygenated blood, and then pumps it around the body where it gives up oxygen to respiring cells.

This is all great, but the problem that I, and every other sufferer of HLHS has, is that I do not have the left side of my heart. It did not develop like the rest of my body did. Because of this, the right side of my heart has to keep up with the demands of my body, all by itself resulting in me becoming breathless very easily, needing to eat regularly and also needing to keep warm to provide and conserve the energy that my heart needs. This has a big impact on my day to day life. I can’t keep up with sports like others can. I struggle to concentrate for long periods, and also suffer from extreme tiredness.

When writing this, it was easy to come up with a whole list of things that I can’t do because of my condition. However when I took a step back and looked at the bigger picture, I am so so so grateful. You see, at my Mum’s 20 week scan, the doctors diagnosed me with HLHS and were given three options:-

  1. Terminate the pregnancy
  2. Continue with the pregnancy and allow me to die naturally after birth
  3. Allow the surgeons to carry out some new surgery that had an unbelievably low survival rate in the hope that it would save me.

Evidently, my parents chose option 3 which I must say I’m rather grateful for. The surgery in question was called the Norwood procedure and Dr Norwood came over from the States to carry out the surgery on me, and to teach the cardiology team at Guys & St Thomas’ Hospitals.

Thanks to the incredible medical team and a ton of prayer, the surgery was successful and I became one of the first survivors of HLHS from the London area. Thanks to the doctors and nurses, I was given a chance at life, something that many sufferers do not get. So instead of looking at all of the things that I can’t do, I think that it’s so important to remember that, if the surgery wasn’t successful, I wouldn’t be here today. I owe so so so much to the medical team at Guys & St Thomas’.

The heart that I have now is very different to the one that I was born with. During the different surgeries that I have had, many people have worked to made me a handmade heart.

I don’t know about you, but when I think of handmade, I always think of my Grandma’s steak and kidney pie, or my Grandad’s homemade pizzas, and boy do these taste so much better than any shop bought ones that I’ve ever had! Now, I’m not saying that my heart tastes better than yours…that would be weird… But what I am saying is that  everything that is handmade is unique. This is what makes them special. You know that a lot of hard work has gone into creating something beautiful, and you are proud to own something so special.

So instead of spending my life bummed out that I have a weird heart, I am so thankful that I am alive and enjoy that fact that I have a part of me that makes me – me. I once read a quote that said, “Be you- everyone else is taken.” I love this so much and I think it’s a very powerful message for everyone to hear. You may not have half a heart, but everyone has a part of them that defines who they are. It’s so important to embrace these characteristics and not let anyone tell us that we’re not good enough, because if you’re being the best version of you that there is, how can you be any better?!

Time is so valuable, and also a tricky little fellow. It never behaves in the way we want. When we want it to speed up, it drags, and when we want it to slow down, it flies past like there’s no tomorrow. However, there is one thing that we cannot deny- time is precious.

Having lived with a terminal condition all of my life, I have learnt to have a very different outlook on life. I don’t know what the future holds. I am one of the guinea pigs with this condition. Because of this, my one “motto” as it were in life, is: “live like there’s no tomorrow”. This keeps me focused on my one task- living. Just because I might not live as long as you doesn’t mean that I can’t live as much as you. I may not be able to be a professional athlete, or climb Mt Everest, I can still live a relatively normal life. At the end of September, now that I have my A Level results, I am heading off to the Hertfordshire University to study Audio Recording and Production. There are so many different courses, jobs and industries nowadays, living with half a heart needn’t restrict your career choice too much. I just had to think a little differently to other people when I chose my career path. Many people look at the course statistics, the job opportunities and how much money you can make afterwards, which are very valuable points, whereas I thought, what do I enjoy that involves sitting down? Oh yeah, I make music. I enjoy that. That was easy! (Oh if only the UCAS application process was that simple…) I’m not perfect. I’ve made mistakes and have sometimes taken life for granted, but I’m at the age now where every year feels like a minute and I don’t want to waste them.

If there’s one thing that frustrates me about having a handmade heart, above the tiredness, above fact that I can’t keep up in sports and above all the guinea pig stuff, is when I look at people who have a regular heart and I see them wasting their life away. Life is so short, and whether you have a handmade heart or not, live your life! Don’t waste your time worrying about what people may think or say about you, because every second spent worrying, is time that you can never get back.

I guess what I want to say is, yeah having half a heart can suck, but I am so privileged to be part of a pioneering journey that is helping to save lives daily. I feel so lucky to be alive and am thankful to everyone who has made the last 18 years and the future however many years possible, and I know that I may never meet you all, but I am so so so grateful, you have no idea! You have all worked so hard to create the best handmade gift anyone has ever given me! I promise to treasure every moment that you have given me, and I beg all of you to do the same too. You have so many years ahead of you and I would hate to see you regret any time that you have lost.

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