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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    Nominations are open for our next Brave Hearts Awards 🏅

    We know that a lot of our young people miss out on awards and trips at school and we feel that they, like every young person should be rewarded for what they learn and how they develop 🙌

    If you know of a young person with a single ventricle heart aged between 8-17 that has achieved and grown, take a look at our list of awards on 👈

    Nominations will close at the end of January 2020 📅
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    11 hours ago  ·  

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    👋 Meet Archie, he is 7 years old and was born with Tricuspid Atresia (TA) a rare congenital heart condition. Archie had his Fontan procedure in September at the University Hospital Southampton, Ocean Ward. The aim of the Fontan procedure is to give a child as much energy as having only half a pumping heart will allow. If surgery has gone to plan the children will gradually recover from the operation and go on to gain far more energy than they had before. He had a longer stay than anticipated, due to a number of complications, but was discharged in October.

    ❤️ “The staff, nurses, doctors, consultants and surgeon were utterly wonderful and we can’t thank them enough. However, it was a consultant anaesthetist, Dr Andy Curry, who stood out in Archie’s mind. His bedside manner, and the relationship of trust that he managed to build up with our very anxious little boy, was astounding to watch. So, on ‘Dress as your Hero Day’ at school, Archie wanted to dress as his hero…”I want to dress as Dr Andy because he helped save my life and he’s my friend”…gulp” – Archie’s mum Charlene.

    😻 We have been blown away by this story. A month after coming home from hospital and Archie is raising a smile, dressing up as his hero and on his way to school. This is one strong boy, as are all of the children in the LHM family.

    🙌 Give this post a share to show your support of Children’s day.

    University Hospital Southampton NHS Foundation Trust
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    1 day ago  ·  

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