Here you can read stories from other young people about how life is for them with half a heart. You might be surprised to see how much you have in common with other people!

People don’t really take notice of “invisible” disabilities – Anise’s Story (16)

I was born with a complex congenital heart condition called “Tricuspid Atresia” which basically means that the tricuspid valve in my heart didn’t form. I also had holes in my heart which caused my blood to mix before being pumped to my body (I wasn’t getting enough oxygen). When I was about 6 weeks old … Continued

Imaan’s Story

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

Amber’s Story

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 … Continued

John’s Story

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. At that time, the information … Continued

”PGl 2018 was one of my favourite experiences…the three of us had so much I common” – Imaan 13yrs Activity Weekend Story

Hello, My name is Imaan Aziz, thirteen years old, with Hypoplastic Right Heart Condition. PGl 2018 was one of my favourite experiences… we did everything from quadbiking to campfires. I met many amazing, spirited people. People who could really relate to me and understood what I go through. ”People who could really relate to me … Continued

‘I Was Starting To Rely On My Own Body, Not Machines’ – Becky’s Story

15 year old Becky’s  story is a little different because her mother never found out that she had a single ventricle heart condition until she stopped breathing and went blue after birth. After starting Year 3, Becky unfortunately was bulled because of her condition. Year 6’s would call her ‘BLUE LIPS’. This is always upsetting, … Continued

‘I Have A Handmade Heart’- Ben’s Story

Ben would be slightly older now, but when he wrote about his experiences with HLHS, he was only 18. After sailing through his GCSE’s, like many others, A-Levels came as a huge shock to Ben. Realising that he could implement his skills elsewhere, Ben decided to study BTECH Level 3 Health and Social Care. He’s … Continued

‘My Life So Far With Tricuspid Atresia’- Ryan’s Story

Ryan was born in Jun 1997, and was diagnosed with tricuspid atresia, having his first operation at just 3 weeks old. At school, Ryan does recall struggling physically, and notes that he was treated a bit like ‘an egg about to crack at any moment’. But he got along with everyone, despite that being a … Continued

Alex Webb 21 (HLHS) – Walking Challenge

Although I was born with a heart condition (HLHS), I have always thought I was ‘normal’ because I went to a ‘normal’ school, eat ‘normally’, play ‘normally’ and have lived, a ‘normal’ life so far. If you’ve not known anything else, it can be easy to forget that you take medications daily, always have and … Continued

Andrew Kerry – Transition

I still feel like a child. I’m not ready to accept that in 4 months I will have to leave university, find an adult job, get an adult house and do boring adult things like pay bills and watch period dramas on Channel 4. I recently turned the grand old age of 21 which means … Continued

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    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 🙌

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    12 hours ago  ·  

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