‘I’m Just Your Typical Lad Or Monkey’- Enzo’s Story

Hello, my name is Enzo and I’m nine years old.

I was born with hypoplastic left heart syndrome, also referred to as half a working heart. Here is a little story from me.

I’m just your typical lad or monkey as my mum would put it. I enjoy school and science is my favourite subject. I have friend’s and get on well with everyone. My only problem is I can’t always keep up or play out either. Having a special hand-made heart means I have to be extra careful with outdoor activities. I’m also on warfarin.

The cold weather isn’t great for me and I can’t really breathe properly when it’s really cold, so mum and dad always wrap me up. I don’t mind though. Sometimes when other kids are in just a jumper, I have to wear a big coat with hat, scarf and gloves.

I’ve had three open heart surgeries, but I only kind of remember one. I remember two things from this operation – going into a large white room and I also remember that mummy brought me some strawberries and one was so big all the doctors and nurses were amazed! It was well yummy!

I remember being away from my brother and sister but they always came up to visit and brought me toys. In fact my hospital bed was full of teddies and toys. I’m glad to be home, mummy always tells me I’m doing well and doctors do too, but now my heart is starting to leak and that’s kind of scary. I now have to be checked a bit more and have regular ECGs which is kind of cool as I’m like a robot but it can be annoying when I need the toilette or sleep.

I feel very lucky to have good nurses and doctors, they’re the best. Sometimes I am scared but they help me and always talk to me. My mum also always talks to me and explains. I’ve learnt to do things on my own and I know how to control my breathing now and when I need to rest. Mum always lets me on her computer to go through the Little Hearts Matter Facebook page and I get to see other kids like me and it’s nice to see as we don’t know anyone local with a heart like mine, not even my doctor’s really know and that’s why I go to a special hospital.

Every time I ask mum something and she isn’t sure, or my teachers ask her, she replies “I’ll have a look or word with Little Hearts Matter.” It’s nice to have somewhere to turn as I can feel alone sometimes. I’ve done things I was told I wouldn’t be able to do, I used to be very poorly all the time too and always in hospital but the last few years I’ve done really well and no longer get really ill anymore (fingers crossed). As I’m getting older I understand more and I can help my family look after me more as now I’m aware of my heart etc. I don’t let having half a heart stop me and I enjoy living a full life. Ok I have to miss out on a few things but I would rather be here than in hospital.

 

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