Hey everyone! I'm Andrew and I have Hypoplastic Left Heart Syndrome (HLHS). It was lovely seeing lots of you at the Open Day and I'm sure you’ll agree that it was a great day! :)
I'm a people watcher. I'm not a massively sociable person. I’d happily have a conversation with someone, but also, I’d be just as content sitting in the corner in my own little world (Yay for being introverted!). And as I was sitting in the corner, watching on on the morning’s happenings I just loved how everyone was smiling and happy! I'm sure if you put 50 young people who didn't have heart conditions in a room together they wouldn't be as outgoing and chatty as we all were on Saturday, but because we have this common ‘thing’ that unites us, I feel like we’re all great friends without knowing much about the other person! I guess it just made me happy! :’) (cue emotional music...).
As much as Little Hearts Matter being around for 20 years is a long time and an amazing achievement, in the grand scheme of things, 20 years isn't that long. The surgery that many of us went through when we were born is still relatively new, so as I stand here, an 18 year old guy, I feel really old! When I was born, Dr Norwood, who came up with the Norwood procedure, (aptly named...) came over to the UK to perform the surgery on me and teach the medical team in London how to do the surgery, so I think I was the second survivor of HLHS from London because of Dr Norwood. That is a weird thought. What also is weird, is that I've never met Dr Norwood since, so I've never been able to meet, let alone say thank you (and give a big hug) to the guy who saved my life... But I guess that’s why doctors and nurses do an incredibly amazing, fantastic job. They save the lives of regular people like you and me everyday and don’t always get the recognition that they deserve.
I'm going to be honest and say that there are times when I go “man, having half a heart really sucks!” Being the one that’s left out at school, or not being able to go somewhere because I'm too tired or whatever it may be, I can’t deny that fact that there are times when I just wish I had a whole heart! There are also times when the thought about having half a heart really excites me! The relatively new surgery that we went through when we were born has now been perfected on us and is a fairly routine procedure in specialist cardiology centres and is saving lives daily! Because of you and what you've been through, lives are being saved! You are amazing! It’s not just the doctors and the nurses that are the unsung heroes. Because of what you've bravely been through all of your life, children now have the chance of life!! That’s the exciting bit!! We are ground-breakers, not guinea pigs! You are special, unique and the best version of you that there will ever be, so don’t let anyone tell you that you’re not good enough!!
If that’s not a reason to smile, then nothing is! I'm sure that every smile at the open day brought hope to a family who are just about to go through what we've already come through. So when the going gets tough, just remember that what you've been through and whatever you go through in the rest of your life, is giving another child the chance to live.
Phew! That was deep and meaningful! So to lighten the mood, here’s a picture of a
Brilliant Andrew. Thank you so much for this. You are so right about you as young people forging your way forward as pioneers. The younger members have so much to thank you all for. with best wishes from Suzie, someone who met you all when you were small and is so delighted to see you all growing into amazing young adults.
ReplyDeleteAndrew, that was truly an awsome and inspiring piece ! My Grandson is just about to turn 5 in a few weeks time and underwent his Fontan at the end of January in Birmingham, then got rushed back in a few days after being sent home as he had an infusion on his lungs. He's back home again now and doing good... and it's because of you I feel so much hope for his future. I hope one day in my Grandson's future he will write a piece that is as inspiring as yours to other 'new' heart children and their families! Thank you and very best wishes to you :-) xx
ReplyDeleteHi Karen! Thanks for your comment and taking the time to read this! First of, happy birthday to your grandson for a few weeks time, that's a great achievement! Sorry to hear about the lung infusion but glad he's doing great now :) its a real pleasure to look at the younger members and know that they have hope for a great future. I'm sure he will be a great inspiration for the younger ones when he's all grown up! All the best for you and your family :) Andrew xx
DeleteThanks Andrew, I shall pass on your best wishes xx
DeleteWow! So brilliant to read Andrew's blog, great to get his perspective. My son has HLHS and is 7, we took so much away from the LHM Open Day last week.
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