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].

“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

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    Open Heart Surgery during Lock-down | LHM parent member Rose shares some uplifting words for us.

    "We were very apprehensive about this surgery as the last one he had was a very long recovery. He literally has made so many people proud, Naayt had his open heart surgery on the 11th June and was discharged 11 days later... home! yes, home!"

    "I couldn't believe it either. You will be so amazed at how pink they are after this surgery and its so lovely to see. The only thing that stops them is the drains which he had 1 left in literally 3 days before discharge and his inr being in range which happened on the day he was allowed home."

    "These kids are so amazing and I am so amazed at how fast they can recover and get through these operations."

    Half a Heart, Not Half a Life x
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    Have you ever seen our first logo?

    In 1994 ‘Left Heart Matters’ was a team of volunteers, supporting families whose children had a life-threatening diagnosis of Hypoplastic Left Heart Syndrome. At the time, Birmingham Children's Hospital and Charity was the only centre treating for this rare condition.

    Half a Heart, Not Half a Life
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    14 hours ago  ·  

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