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].
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
“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
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
“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
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
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
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