Amy (15, HLHS)


So, where it all started… I wasn’t alive at this point but at the 20 week scan I was diagnosed with Hypoplastic Left Heart Syndrome (easier version – half a working heart). So my Mum and Dad where transferred to Guys Hospital London (right by London Bridge) after that 20 weeks scan where they then had regular visits and scans to attend which must have been a real pain because we live in Brighton!

So on the 12th November 1998 at around 8:30pm my Mum gave Birth to me at Guy’s hospital. Since then I have had 3 major open heart surgery’s – one at 4 days old and then I wasn’t allowed home until six weeks after, then another one at 8 months. The third and final open heart surgery that I have had (and hopefully the last for a very long time) was when I was just four years old.

During those four years I had one stroke just after my second stage and pneumonia at my third stage. My immune system was very weak for some time. The only memories of those four years was I think just after my third stage I was watching the Tweenies Christmas special over and over and over again in hospital which must have been very annoying for the nurses (I loved it so much if anyone else got hold of it I would yell until I could get it back! I was sometimes very naughty). Also I remember one day eating an almond bite cake with my oxygen mask on and lots of presents around my bed (that was a great time – the presents)! And once I got stuck in the loo because I didn’t want to see the anesthetist before my third stage.  They had to get the special key to get me out.  But I had my glow in the dark Barbie which wasn’t even that bright but it helped as it was very dark in there!!

Oh and apparently I am a very loud screamer when I wanted food.  The loudest baby on the ward (which I can totally understand – I am still very loud today). I have just learnt one thing very recently that my Mum and Dad gave me a present each day I was hospital at my third stage, which I thought was really kind but sad because I don’t get one each day now! J and because it was really near my birthday  I came out with so many presents! I just wish I could remember them…

So then through my little girl years I didn’t have any more operations. I did have regular checkups with my amazing Dr Miller (if anyone has him you are really lucky)! I went to my very local primary – just down my road which was great because I got very tired extremely easily, but that is a great advantage to living in Brighton because everything is so close and I could still play with my friends and have a run around in the playground as a little girl. This was good because it made me feel ‘normal’ which I don’t always doL.

Up until 9 years old my oxygen levels were always very low – around 80/ 85% but then they found that they could thankfully fix that with a small coil type thing which blocked a vessel and then more blood went through my heart. This made a huge difference my progress at school became much better. I didn’t cry as much.

I am now at secondary school.  It has its ups and downs but I get school transport and don’t do pe (which my friends are jealous of). The school is huge so I have plenty of exercise going to and from my lessons. Then 3 years ago I had my second key hole surgery which stretched my aorta with a stent as it was too narrow, which was slightly scary because no one knew before they did the operation if it was going to burst or not. There is a patch on my aortic arch which as I grow won’t grow with me so that could always be another possible open heart operation to replace it or stretch it more. However luckily there wasn’t an issue and the operation was a success!

I am now studying my GCSE final year and although I do find some subjects, particularly Math’s and Science, hard, it isn’t all bad.  I do have to be careful not to do too much and sleepovers and parties are rare but I have great friends and a loving family around who I know will always support me (whatever happens).  My future is uncertain but I know that the Doctors are amazing. Good advice is to take each day as it comes and live each day to its full!

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