‘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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    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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    3 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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    19 hours ago  ·  

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