How we started

Our story began in 1994, when we were known as Left Hearts Matter. Left Hearts Matter was set up at the request of parents of children who had a life-threatening diagnosis of Hypoplastic Left Heart Syndrome. We were a volunteer team that offered support to families whose children were sent to the only centre treating this complex condition in the UK, Birmingham Children’s Hospital.

Over the following two years, the charity grew, applying for charitable status in 1996. Other cardiac centres throughout the UK began to offer treatment and the charity’s services expanded to meet the needs of a growing membership. The services included parent-to-parent telephone support, hospital visiting and yearly Information Open Days.

In 1999 we were awarded a Lottery grant to support the further development of our work. This enabled us to expand the charity to meet the needs of a growing national membership. We could now offer telephone support, build a regional network service and offer parents information on many aspects of day-to-day life with a child with complex problems. We produced packs to help parents with disability allowances, and created a special antenatal support service for the 50% of families who had their diagnosis made during pregnancy. We were also able to build on our reputation throughout the specialist paediatric cardiac service around the UK. Eventually clinicians began to make direct referrals to Left Heart Matters.

As the charity became a recognised service, families of other children with complex disorders sought help from us and medical teams began to request further referrals. We could see there was a much broader need for our support and so we consulted our membership, requesting their thoughts on expanding our remit to include all families where a single ventricle condition had been diagnosed. The membership responded with a resounding ‘yes’, stating that they hoped our services could be available to all.

We officially launched our new role in March 2004, changing our name to Little Hearts Matter and offering support to anyone affected by the diagnosis of a single ventricle heart condition.

In 2012 we successfully gained the Information Standard accreditation. This is a Department of Health scheme developed to make sure that members of the public have access to accurate and impartial medical and lifestyle information. It means that our members can be confident when accessing our publications and the information pages on our website.

Today, Little Hearts Matter supports over 3,500 Full Members, with our members coming to us at various points in their half a heart journey.

Be social with us - our latest tweets and posts

    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 www.lhm.org.uk/youth-zone/lhm-brave-heart-awards/ 👈

    Nominations will close at the end of January 2020 📅
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    8 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.

    #ChildrensDay
    University Hospital Southampton NHS Foundation Trust
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    1 day ago  ·  

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