‘We are prepared to spend his first birthday in hospital, and that’s OK’- Laura on her Son Lennox

There can be so much confusion about suddenly being told you’ll have a child with half a heart when you’ve had healthy children in the past. Laura went through this feeling, even asking herself ‘I have two healthy boys, how can Lennox be so poorly’. Lennox had his first surgery at 3 days old. Those … Continued

‘I Thought It Happened To Other People Far Away’- Maia on her son MacFhionnlaigh

Maia is the mother of MacFhionnlaigh, who has Hypoplastic Left Heart syndrome. She writes how Mac entering her and her family’s life has molded them into better people. He has taught them to laugh more, cry more, and to measure life by love and not years. Maia is a Navy mum, meaning that whilst her … Continued

‘We Are So Blessed And Fortunate To Have Vinnie’ – Jessica On Her Son Vinnie

Vinnie and his family’s heart journey started when they were sitting in the maternity ward and Vinnie wouldn’t feed. Matthew, his father immediately arrived at the hospital to support them. Vinnie spent Christmas day alone in an incubator. To find out about Vinnie’s condition, they had to travel to Birmingham Children’s Hospital. When they were … Continued

‘He’s a born miracle’- Kyra On Her Son Kaiden

Kaiden was born with Tricuspid Atresia, Pulmonary Atresia and a large VSD. After Kaiden’s first surgery, his parents were shocked at the many tubes wrapped around their little boy. But that was only the beginning. After Kaiden’s second surgery, his parents found out that he had severe narrowing in one of the veins and had … Continued

‘The Scariest Experience of My Life’- Michelle on her son Elijah

Michelle Rose is the mother of Elijah, a ‘little bean’ with a series of conditions such as Double Inlet Left Ventricle, Transposition of the Arteries, Hypoplastic Right Valve, and Sub Pulmonary stenosis. For parents, the 20 week scan usually confirms the pregnancy is going smoothly, and Michelle naturally expected this. However, she describes the shock … Continued

‘He Had A Chance Of Surviving’ – Jessica on her son Ollie

By the time of her 12 week scan, Jessica had a high chance of giving birth to a child with Down syndrome and/or a heart condition. The words ‘I can only see half the heart beating’ brought her world crashing down as she sobbed into her husband’s arms. Their little boy had Hypoplastic Right Heart … Continued

The Stories My Parents Tell Me About The Whole Experience Scare Me- Thomas Messer

Thomas Messer is a 19 year old musician from Scotland with half a heart, or Hypoplastic Left Heart Syndrome (HLHS). Over the last 19 years Tom has learnt to live with HLHS and all the challenges it has presented to him. His mum, Carole, said: “He copes really well and never complains. Transition has not … Continued

Shane tells Olivia’s story

After my daughter’s third heart operation I broke down in tears because it was the first time I had ever seen her lips, fingers and cheeks pink – they were always blue before. My name is Shane and my daughter Olivia is 11 years old with only half a working heart. After 10 years of … Continued

My baby was only three days old when he had an open heart operation.

A few minutes into my pregnancy scan, the sonographer told us to go and get a drink and to come back shortly as she couldn’t get a clear view of the heart. I think we knew then that something wasn’t right. Once we returned we were told that the left side of our baby’s heart hadn’t … Continued

After two miscarriages I fell pregnant again, with a baby that had only half a working heart.

We found out at the 20 week scan that there was something wrong with our baby’s heart. A week or so later we saw a specialist who confirmed that it was Pulmonary Atresia, in short, our baby would only have half a working heart. We had already experienced two miscarriages by this point and I … Continued

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    "Niamh's not feeling 100% today, I asked her if she'd be more comfortable in pyjamas than Jigzy but bless her heart she said "I like to wear this top because it reminds me of the special people like doctors and nurses and Little Hearts who all make me feel better when I don't feel good, so when I wear Jigzy I always smile and it makes me feel better. "Hooray for Jigzy 🥰 xxx"

    And hooray for children living with half a working heart today, just like Niamh here.

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    “Shanniah age 1, HLHS, has truly enjoyed being out and about in the lovely weather so much so she gave herself the shakes 💕”

    If you are a member of the charity and have a feel-good moment to share, please send it to us via email to [email protected]

    Half a heart, not half a life
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