Andrew Kerry – Transition

I still feel like a child. I’m not ready to accept that in 4 months I will have to leave university, find an adult job, get an adult house and do boring adult things like pay bills and watch period dramas on Channel 4. I recently turned the grand old age of 21 which means … Continued

Sophie ( 20, HLHS )

This week is Mental Health Awareness Week, a cause very close to my heart- well, half of it….😉 My name is Sophie, I am twenty years old and was born with half a working heart (Hypoplastic Left Heart Syndrome). However, two and a half years ago, I was also diagnosed with Anxiety. “However, two and … Continued

Thomas (13, HLHS)

Hello, I’m Thomas. I’m 13 years old and I have Hypoplastic Left Heart Syndrome. Here’s my story about my life so far. Fenestration Frustration They knew about my heart condition before I was born so I was transported by ambulance to Birmingham Children’s Hospital. I had my first open heart surgery, the Norwood procedure, when … Continued

Chloe (19, Sibling)

Hello, my name is Chloe and I have a little sister called Ella who has Hypoplastic Left Heart Syndrome; I am seventeen years old and Ella is ten years old. Through the years I have learnt about what the person with the condition is like and read about what they go through, but I have … Continued

‘I Look Forward To What Could Be In The Future’- Evie’s Story

I was born on the 24th of October in 1996 with Hypoplastic Left Heart Syndrome.I had my first operation at 4 days old, then at 6 months old and my last (so far) at 3 years old. From what I can remember which is not much at all, my operations went well and I would … Continued

Sarah (21, HLHS)

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. … Continued

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 … Continued

‘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 … Continued

‘Life Is What We Make It’- Jack’s Story

Hi guys and girls, my name is Jack. I was born on Monday 29th November 1993. I have a life threatening heart condition called, Hypo Plastic Left Heart Syndrome. I was diagnosed at Musgrove Park hospital in Taunton, the county town of Somerset. I live in a very small village called Ashcott with my Mum, … Continued

Lucy (16, HLHS)

Hi, my name is Lucy, and this is a short piece about what life is like living with a handmade heart. There are many ways that my heart affects my everyday life. Sometimes I feel as if I’m on a see-saw, trying to balance my lifestyle just right. I am 16 years old, entering my … Continued

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    If you have signed up to our Open Day, but can no longer attend, please email [email protected]

    We had an amazing response to the event and hit full capacity very quickly. There are several families now on our waiting list, so please let us know as soon as possible if you can no longer make the event.

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    Antenatal Support

    Many families first find Little Hearts Matter just after they have learnt that their unborn baby has half a working heart. The Little Hearts Matter team are here to help make any diagnosis and treatment information easier to understand and will always try to help new families cope with the emotional choices needed during pregnancy. Following a call to the support line you will be linked with a member of the antenatal support team.

    Suzie has been with the charity since its inception, working in the LHM office for over 20 years.. She used to be a Congenital Cardiac Specialist Nurse so will listen to all callers’ concerns and work to help them understand what their medical team have told them, especially following a new diagnosis or treatment plan. Although she is unable to give individual medical advice she will help a caller to draw up a list of questions for their own medical team. She also works to help families to access support for a child in school or apply for benefits and she works to give a general overview of life with a congenital heart condition and the support a child or family may need at any stage of their journey.

    For help with an antenatal diagnosis of half a working heart, call 0121 455 8982 ❤️
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