What can you do?

LHM Youth Members can get involved with us in lots of different ways.This website allows you to meet new people, pass on your experiences and find out what other opportunities we offer throughout the year. Your voice matters to us at Little Hearts Matter so we want you be involved as much as possible!

Activity events

Throughout the year Little Hearts Matter hold different events that you can be part of.  If you take on the challenge, you could be taking part in one of our activity weekends where you can be experiencing canoeing or abseiling or coming along to a youth day trip. We love to visit zoo’s, space centres and other cool places. We also hold events like our filming event, where our Youth Members managed and produced a professional film telling their half a heart journey. Each event you get involved with means meeting new people and being involved with some fun and exciting new experiences, so keep a look out for the next one!


For our Youth Members aged 13+, you will have access to our private Facebook page and Facebook Group Chat. This will give you the opportunity to share any stories or ask other Youth Members any questions. Make sure you keep up to date with this page as there will be quizzes and games that you can be involved with, LHM news, lifestyle advice along with the chance to share your ideas to help Little Hearts Matter.


For our Youth Members aged 13+, you will have access to our private Instagram page. This will give you the opportunity to share any pics of achievements or ask other Youth Members any questions. Make sure you keep up to date with this page as there will be plenty of opportunities to celebrate achievements as well as getting useful info.


Open Day

Little Hearts Matter open days are a time for all our Youth Members and their families to come together from all over the country and take part in some of our amazing workshops. These involve information on first aid, your heart and body image, all while including some fun and games, not to mention the pizza and evening event. There will also be a space for our 18+ members to meet and have a chat, away from the workshop sessions. This is a great chance for you to meet new people and share stories with other Youth Members just like you!


When you become a LHM Youth Members you will receive our ‘Big Hearts Matter’ youth newsletter. This includes articles about living with half a heart, upcoming events, hints and tips youth members stories and so much more. All of our newsletters will also give you the opportunity to be involved with some of our competitions and games!

Regional events

We also hold regional events that enable you to meet other LHM Youth Members that are near by and get some more information about your heart. Keep up to date on where we are of to next so you can come and meet us and the other youth members!

Be social with us - our latest tweets and posts

    Hypoplastic Left Heart Syndrome (HLHS) - a congenital heart condition (a problem that a baby is born with).

    HLHS is made up of a collection of problems on the left side of the heart. Usually, the pumping chamber (left ventricle) is small (hypoplastic) and the mitral and/or the aortic valve may be narrow, blocked or not formed at all. The body artery (aorta) is often small (hypoplastic) and there is a hole (atrial septal defect) between the two collecting chambers.

    The blood’s journey through the heart is very different from normal. The blue (deoxygenated) blood flows into the right collecting chamber (right atrium), through the valve (tricuspid valve) into the right pumping chamber (right ventricle). From there it is pumped up to the lungs where the blood receives oxygen. The red oxygen-filled blood then flows from the lungs into the collecting chamber (left atrium) in the left side of the heart, but it will be unable to then pass into the left pumping chamber (left ventricle). As the valve will be blocked, it therefore passes through the hole between the two collecting chambers into the right side, where it mixes with the blue blood and follows the normal path to the lungs.

    Whilst the ductus arteriosus is still open (patent), the blood will pass from the lung artery into the body artery and then around the body. When the duct closes, the baby will no longer have oxygen flowing to their body. Gradually, without medical intervention, the baby would become sicker and die.

    Hypoplastic Left Heart Syndrome is a fairly rare problem that occurs in approximately 1 in 5,000 babies and accounts for 1% of all congenital heart disorders.

    You can find out more about HLHS on our website here: www.lhm.org.uk/information/single-ventricle-heart-conditions-and-their-treatments/hypoplastic-lef...
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    4 hours ago  ·  

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    As we approach the October half term, we hope our heart heroes have been settling in and enjoying the opportunities that come from school and nursery ❤️

    Half term is a good place to arrange a meeting with your child’s form tutor to discuss their needs at school and to update the Educational Health Care Plan.

    You will now have a better understanding of how your child is coping with challenges like tiredness at school, so having this chat can be helpful to prepare for next term 🙌

    Share this post to help us spread the word.
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    12 hours ago  ·  

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