Pioneering generation of young people with ‘half a heart’ saved by surgical advances only to be let down by society

1 May 2019

  • A new survey revealed almost three quarters (70%) are living with mental anxiety as a result of struggling with their heart conditions.
  • Nearly half (47%) feel isolated and left out of activities, preventing them from achieving the same as their peers.
  • Three quarters (75%) say their lives are severely impacted due to their heart condition being invisible to others.

A pioneering generation of young people living with ‘half a heart’ have been saved by state-of-the-art surgery only to be let down by society because awareness of their condition is so poor.

There are now 3,300 children and young adults in the UK with a single ventricle heart. They are a generation who would not exist without the wonders of modern medicine.

More babies born with these rare heart defects are surviving than ever before thanks to surgical advances to re-plumb their heart to function with a single pumping chamber. Yet these remarkable youngsters are often left isolated, struggling at school, suffering anxiety and other mental health issues because their needs are overlooked and misunderstood.

The widespread failings were exposed by a report launched today (May 1) by national children’s heart charity Little Hearts Matter to mark its 25th anniversary…Continue


John’s story, 17 years

About 18 years ago, Little Hearts Matter changed Anne Marie’s life. At 4 months pregnant, she went to her 22 week scan and received awful news. The doctors confirmed her baby’s heart had not developed properly and he would have a very serious condition known as Hypoplastic Left Heart Syndrome…Continue

Amber’s story, 15 years

Amber, 15yrs, has Pulmonary Atresia –  a serious and non-correctable heart condition.  She has undergone a series of open heart surgeries but will never be cured. Amber has struggled at school and has been absent for long periods.  She was recently awarded a ‘Brave Hearts – My Heart Award’ from the charity Little Hearts Matter for her increased confidence in managing her heart condition at school.  After a year absent from school Amber returned to school, sat an exam and achieved the highest score in the class.

Zoe, pictured above with Amber, talks in her own words: …Continue

Imaan’s story, 14 years

At her twenty week scan Ferdie received the devastating diagnosis that her daughter had an incurable heart condition. Ferdie is a trained medical clinician and works as a Dentist so she instantly understood the medical jargon and knew how serious her daughter’s condition was. She was give three options; terminate the pregnancy, go to full-term … Continued

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    Reaching Milestones in Lockdown | Elijah's Fontan Progress

    An update from LHM parent member Michelle, mum to Elijah who had his Fontan operation 2 years ago...

    "Hard to believe this was 2 years ago, and then a pic of him now! 😍 We couldn’t have got through our journey so far without the amazing support from the NHS and the LHM team. We will always be thankful."

    Half a Heart, Not Half a Life x
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    1 hour ago  ·  

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    The Youth Zone is our dedicated support network for young adults aged 11 to 17 living with a single ventricle heart condition. During lock-down, we have been working hard to keep our youth members supported and connected with each other.

    We just wanted to shine some light on this awesome bunch, as they have come so far and achieved so much during the Covid Crisis. One of our highlights being this video, a 26 minute exercise challenge via Zoom, all in support of LHM for the 2.6 challenge. They smashed the routine and raised over £500 for us! Thank you.

    The group keeps in touch through regular Netflix parties and lots of healthy discussion on the private message forums, as well as having access to 1-1 support provided by LHM whenever they need it.

    None of this would be possible without our youth leader Lexie and our awesome youth mentors, please can we all thank them for the incredible work they have been doing for these brave young people throughout this crisis.

    Visit the youth zone here
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    9 hours ago  ·  

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