Life With Half A Heart During Coronavirus – Jack’s Story

“Jack was born in the early hours of 6th May 2006 weighing 5lb, 11ozs. He was small considering he arrived on his due date but was perfect to us in every way. They weren’t concerned over his weight, however, his blood sugar level was low so he was taken to the SCBU (special care baby … Continued

‘He Was So Pink And Amazing To See’- Melanie on Her Son Jacob

I and Daniel found out at our 20 week scan that our baby had suspected HLHS, PA and TGA we went back and forth fortnightly to check his progress which never really changed. I was induced on 16th April and Jacob was born 05:13am on 17th April 2017 weighing 8lb 9 1/2oz. luckily for us, … Continued

‘I’ve Always Loved Music and Singing’- Charlie Turner

Charlie was born with Hypoplastic Left Heart Syndrome in 2003, but he hasn’t let that stop him from doing what he loves: acting and singing. He made his stage debut in 2013 in Whistle Down the Wind and has since joined the musical theatre group, learning all about singing, dancing and acting. Although he notes … Continued

‘I Get Really Frustrated and Unhappy…Because I Can’t Represent The School’- Hannah’s Story

Hello my name is Hannah and I’m 10 years old and I have a handmade heart. The name of my heart condition is hypoplastic left heart syndrome, which means that only half of my heart works. I was very poorly when I was born and I’ve had three heart operation and three cardiac catheters. I’m … Continued

‘I Know That I Have A Special Handmade Heart’- Tia’s Story

I feel sad about my heart, I want it to get better, I know that I have a special handmade heart and that the doctors did amazing things to make it work and keep me alive. I had two open heart surgeries when I was a baby and was on a life support machine. I … Continued

‘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. … Continued

‘I Am Normal Like All The Other Children But I Am Different Inside’- Pearl’s Story

Hi, my name is Pearl. I am 7 years old and I was born with half a heart. I nearly died when I was a baby but the doctors saved my life. I have had 3 big operations and 1 small one. I can do every sport and play every game as long as I … Continued

‘My Dodgy Heart’- Jago’ Story

Hello.  My name is Jago and I am 7 years old.  I’ve got a bit of a dodgy heart and I’ve been in hospital a few times.  I am going to have a pacemaker next week. Having a poorly heart makes me get very tired.  I will be less tired when I get my pacemaker. … Continued

‘My Mummy Was Told That I Had A Special Heart’- Dillon’s Story

When I was born my Mummy was told that I had a special heart that needed fixing. My Mummy says that I was very poorly and had a big operation on my heart and had to spend the first 10 weeks of my life in hospital. I must have been very brave because I have … Continued

‘Let’s Celebrate Who We Are And Be Happy’- Colbie-Kate’s Story

My name is Colbie-Kate and I was born with Complex Congenital Heart Disease My main Problem With my heart though was Pulmonary Atresia. When I was born they didn’t know I had a heart problem. It was the day after I was born they found out. I was the first child so my parents didn’t … Continued

Be social with us - our latest tweets and posts

    The Youth Zone is our dedicated support network for young adults aged 11 to 17 living with a single ventricle heart condition. During lock-down, we have been working hard to keep our youth members supported and connected with each other.

    We just wanted to shine some light on this awesome bunch, as they have come so far and achieved so much during the Covid Crisis. One of our highlights being this video, a 26 minute exercise challenge via Zoom, all in support of LHM for the 2.6 challenge. They smashed the routine and raised over £500 for us! Thank you.

    The group keeps in touch through regular Netflix parties and lots of healthy discussion on the private message forums, as well as having access to 1-1 support provided by LHM whenever they need it.

    None of this would be possible without our youth leader Lexie and our awesome youth mentors, please can we all thank them for the incredible work they have been doing for these brave young people throughout this crisis.

    Visit the youth zone here lhm.org.uk/youth-zone/
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    7 hours ago  ·  

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    Open Heart Surgery during Lock-down | LHM parent member Rose shares some uplifting words for us.

    "We were very apprehensive about this surgery as the last one he had was a very long recovery. He literally has made so many people proud, Naayt had his open heart surgery on the 11th June and was discharged 11 days later... home! yes, home!"

    "I couldn't believe it either. You will be so amazed at how pink they are after this surgery and its so lovely to see. The only thing that stops them is the drains which he had 1 left in literally 3 days before discharge and his inr being in range which happened on the day he was allowed home."

    "These kids are so amazing and I am so amazed at how fast they can recover and get through these operations."

    Half a Heart, Not Half a Life x
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    23 hours ago  ·  

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