Sarah (21, HLHS)

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Hi, my name is Sarah. I am a singer songwriter, I also work in an after school club with 2 to 4 year olds. I am 21 years old (nearly 22) and I live with my parents, brother and sister in Kent. When I arrived in the world back in 1992 I was 5 weeks early.  I was so eager to see the world; still am… would love to travel.

Back in 1992 they didn’t have the options available that there are now. My parents had no idea that I had a heart problem until 24 hours after I was born. I was transferred to the Royal Brompton Heart & Lung Hospital by ambulance with my Dad following by car in the middle of the night.  Apparently Dad gave Mum a list when he returned to our local hospital afterwards and the list was more like a shopping list of medical problems including Hypoplastic Left Heart Syndrome!  Mum had had me by caesarean section so hadn’t been able to come with me, she discharged herself though in time for my first op at 3 days old.

The Norwood’s procedure was not really available when I was born so lots of my surgery was experimental hence the number of operations has now reached 19.  My parents were told to look at it as if every so often I need a full MOT and service!

I had a wonderful Cardiologist at the Royal Brompton, Andrew Redington, who came up with all the bright ideas. He unfortunately is no longer working in the UK, he is now a Professor of Cardiology in Canada. A year after he left we went over to Vancouver. We wondered about sending him a postcard saying “Hello we’re here” but thought that might not have gone down too well.  I am very grateful to Andrew Redington for saving my life and not giving up on me in the early years.

During my early years I spent a lot of time in hospital, mostly in London but usually going via a brief stay at the local hospital.  I spent my first Christmas in hospital, my first birthday and my second Christmas in hospital but after that I started to get it right and generally avoid being in hospital on the big occasions! At the age of 3 months I was apparently in a pretty bad way and if it hadn’t been for Andrew Redington I wouldn’t be here – others were about to give up on me.  By the age of 2 I’d had 6 operations.  My parents joke that I’d probably been reading the medical textbooks whilst I was in intensive care and was just trying out all the different conditions and problems!

At home Mum and Dad would try and give my brother and I a normal life.  My brother is 18 months older than me.  I used to be on home oxygen and it didn’t stop me from playing hide and seek despite the fact that it was so easy to find me by just following the tubing!  We even went to the local swimming pool complete with oxygen cylinder – can’t imagine how the pool attendants reacted but Mum and Dad were determined we would carry on as normal as possible.  My sister Holly arrived when I was nearly 3 and I’d only just been walking for a couple of months.  I had learnt Makaton sign language as it was too much effort for me to talk (can’t stop me from singing now so that’s quite an improvement!)

As I grew up I gradually got a bit stronger.  I was weaned off the oxygen by the age of 5 when I started school. School life was always difficult.  I couldn’t play outside with the other children because I was so fragile and I was on warfarin.  I had one to one support at school, or was meant to, but would always be sent home early because I got so tired.

Mum is a horse enthusiast and where she went to ride they did carriage driving.  I really wanted to have a go so Mum spoke to the Cardiologist about it and she persuaded him that I would be safe.  It was great fun and within a few months of learning how to drive a pony and carriage I was competing at Windsor.  I was so happy when I was presented with a silver salver for the highest scoring newcomer.

Mum and Dad had bought me a guitar as a Christmas present whilst I was still at primary school and I had some lessons for a while.  When I started at senior school I gave up for a couple of years until my Dad told me about a local music club which he’d started going to.   I went along and met some others my age who were just enjoying learning to play guitar and sing.  I haven’t stopped since!  Singing and playing my guitar really has made such a difference to me.  I now perform at local open mic nights and have met some lovely people.  I have even been asked to perform at a local music festival and at a charity music night in the coming weeks.  Because I enjoy singing so much, Mum, Holly and I have for the last year been members of Rock Choir.  It’s great fun and I have performed solos for them when we do public performances. Singing has been absolutely brilliant for improving my lung capacity.

I do have to pace myself as I still get very tired but I am determined to have as normal a life as possible.  I did a Child Care course at college as I would really love to work with sick/disabled children.  Whilst in my final year at college I had a suspected TIA but despite this I still managed to pass the course with a grade B and finish on time.  I spent a while Volunteering at a Sure Start Children’s Centre just a couple of mornings a week then recently I have been working as a Nursery Assistant at an after school club each day but am now looking for something new as I realise this was just not the right place for me.

Life is tough for anyone these days.  I am nearly 22 and for 20 of those years my family and I have had the support of Little Hearts Matters.  I have been proud to represent the charity on many occasions, including the House of Lords and have even been on local TV on the politics show.  When I was younger I felt very much alone with my heart condition but then when we went on the activity weekends with LHM I realised I was not alone.  There were other children with scars like mine!

My parents have the motto “Take each day as it comes and live each day to the full” – I have every intention of doing that!

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