My Special ❤️ – Grace’s Story

Hello! My name is Grace and I have just turned 7 years old. My birthday is on New Years Day and this year for the first time my Mummy and Daddy let me stay up until midnight on New Year’s Eve to open my first birthday present! I coped well but my Mummy was tired… … Continued

Heart Surgery During A National Lockdown – Max’s Story

Hello world. Max (youngest of four siblings) was born early on the 2nd of Jan 2020. He was scheduled for a planned C-Section on the 6th of Jan, but had other ideas... 12 hours after birth, we faced losing Max. I'd literally just collected my kids and sister-in-law to see him for the first time, … Continued

“His heart matters” A love letter to my brother

“Burny! Burny, burny.”, I protest. You’re burning my brother!? screams silently in my 2 year old mind; as the men in white coats explain ‘it’s just a light from the monitor on his toe, not a fire. It won’t hurt him.’  Somehow, I don’t trust them with their big words and violent hands. All I … Continued

Our HLHS Journey and why I created an app for families like ours

Having a child is an exciting journey - and when you have your first, it’s like a great big step into the unknown. When I was pregnant with Maisie, like many others, my husband and I did all the things you do when you’re expecting a new arrival. We went to antenatal classes, read all … Continued

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

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