‘I Have Been A Trustee For 4 Years’- Hannah’s Story


Hannah. 20. Born In Newport, South Wales. Slightly addicted to Harry Potter. ( Okay, more than slightly). Second Year University Student. These are some facts about me, facts that pretty much everyone who knows me will know.  One important fact that only some people know is that I was born with Half a Heart. And yes, at first, it was as bad as it sounds. Basically, One of the ventricles, one of the chambers in the Heart that pump the blood around the body, pretty much didn’t form. When I was born my parents were given a list of conditions, Transposition of the Great Arteries, Double Inlet and Outlet Left Ventricle ( and a few others i won’t bore you with), but it all comes down to the fact I was born without my right ventricle, the right side of my heart.

Although most  Congenital Heart Conditions are discovered during one of the prenatal scans, meaning that parents can prepare for the times ahead, my parents didn’t know until I had my first Post-Natal scan. In 1994, the outlook for babies born with Congenital Heart Disease wasn’t very bright at all. My parents were given a very negative outlook and were told that I probably wouldn’t live past my 15th birthday. They took to caring for an ill child really well and as I was their first, they didn’t have another child to compare me with, and they let me be as normal a child as possible.

I had my first major heart surgery when I was 15 months old, a lot later than most children born with Half a Heart, due to the fact one of the other problems with my heart balanced the others out, meaning I was able to live without the operation for longer, and this was when my ‘handmade’ heart was fashioned. I then had the second and for me, last stage of the operation, the Fontan, when I was 9 years old even though a lot of children born with these conditions have this part of their surgery a lot younger. I remember pretty much everything from that time, Ward 11 and 12 at Birmingham Children’s Hospital, the pre-surgery terror, being able to hear things but not being able to wake up, and the best part, waking up to my parents watching over me. I missed the first few months of Year 4, and I found it a struggle to get back into ‘normal’ life. I had to be careful not to hurt my chest in any way, which was hard when you had a really cute 2 year old sister who wanted to hug you, and I was also on medicines that I would have to take for the rest of my life, which at 9 years old was very daunting.

I say ‘normal’ life because what people without a Heart Condition and I think are normal are 2 completely different things. Normal for me is taking tablets everyday (mostly),  and being breathless every time I walk upstairs. Sometimes I feel so tired I can’t get out of bed, which can be hard when you have plans etc. After my Fontan I became a lot healthier, I could do a lot more, and I could take part in Drama, which I love to do.  Even though I have this condition, I have been in many Musicals, which can be pretty intense with all the singing, acting and dancing to do.  I was part of a Drama school for 6 years and in my last production I played the lead, Bugsy Malone. Yes, he’s a guy but there weren’t many boys in the academy!!  I’ve got a lot more tired recently but studying for a degree will do that to you!!

I’m loving being in University. I get to study the language that I love in order to get the career that I really want, I’ve met some amazing new people, learnt some new skills and learnt to love a new town!!! Aberystwyth University have been pretty great with me, they’ve helped me to get the accommodation I need, and made sure I know where all the support I need is available from, which has made the last 2 years easier!! I have also enjoyed the Social Life, but maybe a bit too much because I had to resit my first year! Luckily I can actually start my second year now, so I’m really excited.

But I wouldn’t have got to university if it weren’t for the amazing surgeons and Cardiologists who gave me my Handmade Heart, because I’m pretty sure if this surgery hadn’t been developed and performed so amazingly I would not be here right now.

Being a part of Little Hearts Matter has made an amazing impact on my life. I’ve met some amazing people, who I’m pretty sure I’m going to be friends with for life, I’ve learnt a lot more about my heart than I learnt from the Doctors and they’ve given me so many amazing opportunities. Because of them and My Dad I carried the Olympic Torch, I spoke in the Houses of Parliament and this March they, the members and people in charge, gave me the most amazing opportunity. They elected me to become a Trustee for the charity, the youngest and only member with a Heart Condition and I am going to make them all proud of me.

Not many people would be thankful that they have a Heart Condition, but many of them aren’t born with one and aren’t given the opportunities I was. Yes, My condition has made me feel negative sometimes, especially when I think about the future, because it may be uncertain like life always is, but because of it I have met some amazing people, become the Trustee of an amazing charity where I can help other people like me and it has made me who I am. It’s taught me to live life to the full.

Hannah. Aged 20. Handmade Heart. This is who I am and Always will be. And I wouldn’t have it any other way.

Hannah, 4 years on after writing this, has also given us an update of where she is in 2018.


In the last 4 years I’ve had quite a lot going on!! I finished university, moved to Telford, and moved back again!!

I’m now 24 and settled in my own flat in Wales, which is (not surprisingly) an homage to all things Harry Potter!! I currently work for Admiral insurance in the claims department and I love it!!

As I continue to have a flair for the dramatic, I’m a member of a theatre group in Newport and we’re currently rehearsing for Forbidden Broadway, a parody musical and it’s so much fun!! Whilst in Telford I played one of the stepsisters in Rogers and Hammerstein Cinderella, which is my favourite part yet!

Little Hearts Matter continues to be an important part of my life. I have been a trustee for 4 years now and I continue to be thankful for that amazing opportunity. I take comfort in the fact I know LHM will be there when I need it!

Proud Heart Warrior

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