“This is the reality of being a Heart Mummy 💜” Jade’s Story

We try to stay so strong, with a smile on our faces to make sure our little ones don't see how much we hurt on the inside, knowing that they have such a special heart like no other. We dread every appointment, waiting to hear that something needs doing, the worry that consumes you is … Continued

Claire & Vinnie’s Story

Claire Holliday, from Birmingham, is mother to 4 year old Vinnie who is waiting for a heart transplant. They’ve been in and out of hospital throughout the last year. Claire talks about her experiences and how the charity Little Hearts Matter has been a lifeline of support. Claire carried her four year old son Vinnie … Continued

Maggie & Daniel’s Story

The pandemic and lockdown has created monumental changes for young people.   Parents of young people with half a heart have been living with fear and anxiety.  Those with added learning difficulties have has less support and feel left behind.   Maggie Raja and her son Daniel, 17yrs, talk about the challenges they’ve faced. Can you tell … Continued

Life For A Heart-Family In 2021

Jen is heart-mum to Sophie who is 11 and has Hypoplastic Left Heart Syndrome. Jen talks about her experiences of lockdown as a heart-family and how their normal is different. “The beginning of lockdown was a worrying time, because nobody knew whether COVID presented a significant risk to children.  Although we did limit Sophie’s contact … Continued

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

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