LHM Father’s Day 2020 – Paul’s Story

"Isobel has Mitral Atresia with Double Outlet Right Ventricle, which is a variation of Hypoplastic Left Heart Syndrome. She’s 10 and before we’ve blinked, she’ll be in secondary school. Before Isobel was born, we were wracked with uncertainty about whether to go ahead with the pregnancy, a friend sad; ‘children with additional needs are, if … Continued

“To have any chance in life, he would have to face 3 operations” – Charlene’s Story

15 years ago I was given the most difficult choice of my life. I carried my baby for 8 months and at 5 months I was told the most heart-breaking thing imaginable, I was told that this beautiful boy only had half a working heart. To have any chance in life, he would have to … Continued

“Our lives were turned upside down” – Fiona’s Story

“Our lives were turned upside down when at our 20 week scan the sonographer said there is something wrong with the babies heart and we needed to be seen by a specialist at the John Radcliffe hospital. We anxiously arrived and after a lengthy scan in complete silence we ere told the devastating news that … Continued

“Life in 2020 remains unknown” – Maggie’s Story

“Daniel was born in Malaysian Borneo, and rushed with a medical escort at 3 months old to Alder Hey hospital, where his life was saved. We tried to return to our lives after his first heart surgery, but by three years old it became clear that he could not survive in the isolated district where … Continued

‘It was one of the most difficult and uncertain times in our lives’ – Daniela’s Story

It was one of the most difficult and uncertain times in our lives but it was also helpful knowing that others could understand what we were going through and that we had prepared ourselves and done everything we needed to do to understand what was going to happen to Oscar in surgery.  We are forever … Continued

‘We Are so Proud Of Everything He Has Faced’- Mary’s Story

‘We can’t see all four chambers of your baby’s heart’ were the hardest words we’ve ever heard. After hearing this devastating news, we were so anxious to know what this all meant, but what with the heart being one of the bodies most vital organs, we knew it wasn’t good. Our local hospital completed an … Continued

‘Another Dad Said That Seeing Isobel…Had Given Them Hope’- Paul on his daughter Isobel

Paul recalls his daughter Isobel’s birth. He and his wife were the calmest couple in the hospital. Another couple in a neighboring cot even told him ‘she has you wrapped around her little finger’. This is certainly true, Paul and Isobel are very close. However, their relationship was so powerful that his wife had to … Continued

‘Im His Dad Not His Doctor’- David on his son Alasdair

Alasdair’s father David writes about his experiences in trying to support his son who has a single ventricle heart condition. After finding out about his son’s heart condition, David reacted in only way a Medical Physicist could. He used his health research skills and found all the medical literature he could about the condition. He … Continued

‘I Can’t Make It (Luke’s Heart) Normal’- Joanne, Martin, Ethan, and Luke

Luke’s family reflect together on their experiences of having a loved one with a congenital heart condition. After the anomaly scan revealed that Luke would have half a heart among other conditions, Joanne and Martin spent days at home under a dark cloud and in tears.  But they found support in friends, family and Little … Continued

‘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

Be social with us - our latest tweets and posts

    Hope 🌈

    "Hello! This is my first time posting since recently joining this group. Here’s my favourite lock-down picture of my son Toby (Complex Pulmonary Atresia), he’s just over 2 years old."

    "We’ve been shielding and now very nervously trying to get back to some normality...for Toby and his 5 year old sister."

    Quote shared by LHM parent member Carlie x
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    2 days ago  ·  

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    Reaching Milestones in Lockdown | Elijah's Fontan Progress

    An update from LHM parent member Michelle, mum to Elijah who had his Fontan operation 2 years ago...

    "Hard to believe this was 2 years ago, and then a pic of him now! 😍 We couldn’t have got through our journey so far without the amazing support from the NHS and the LHM team. We will always be thankful."

    Half a Heart, Not Half a Life x
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    3 days ago  ·  

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