This area of the website allows visitors to read individual family stories.

There are experiences from parents and young members across the age groups and with many different single ventricle conditions. Further stories can be seen on the Little Hearts Matter blog which can be found by clicking this link: http://heartlog.tumblr.com.

If you would like to contribute your personal story just email us at [email protected].

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

“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

“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

Life With Half A Heart During Coronavirus – Jack’s Story

“Jack was born in the early hours of 6th May 2006 weighing 5lb, 11ozs. He was small considering he arrived on his due date but was perfect to us in every way. They weren’t concerned over his weight, however, his blood sugar level was low so he was taken to the SCBU (special care baby … 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

Emma’s story

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 … Continued

Be social with us - our latest tweets and posts

    This Black History Month we would love to tell you about Vivien Thomas, a cardiologist who played a crucial role in the development of treatment for children born with Tetralogy of Fallot, also known as Blue Baby Syndrome, and other conditions. Thomas pioneered an operation now known as the Blalock-Thomas-Taussig shunt. At the time, Thomas was disregarded because of racism and prejudice against his lack of an academic background, sadly it was not until the 1980’s that the procedure included his name. The procedure is still used to this day and has helped many of our members. Join us to celebrate this amazing man. ... See MoreSee Less

    1 hour ago  ·  

    View on Facebook
    Have you got a birthday coming up? With this link, you can easily create a Birthday fundraiser for Little Hearts Matter www.facebook.com/littleheartsmatter/fundraisersA simple way to support LHM ❤ ... See MoreSee Less

    1 day ago  ·  

    View on Facebook