Heart Surgery During A National Lockdown – Max’s Story

Hello world. Max (youngest of four siblings) was born early on the 2nd of Jan 2020. He was scheduled for a planned C-Section on the 6th of Jan, but had other ideas... 12 hours after birth, we faced losing Max. I'd literally just collected my kids and sister-in-law to see him for the first time, … Continued

Life With Half A Heart During Coronavirus – Jack’s Story

“Jack was born in the early hours of 6th May 2006 weighing 5lb, 11ozs. He was small considering he arrived on his due date but was perfect to us in every way. They weren’t concerned over his weight, however, his blood sugar level was low so he was taken to the SCBU (special care baby … Continued

‘He Was So Pink And Amazing To See’- Melanie on Her Son Jacob

I and Daniel found out at our 20 week scan that our baby had suspected HLHS, PA and TGA we went back and forth fortnightly to check his progress which never really changed. I was induced on 16th April and Jacob was born 05:13am on 17th April 2017 weighing 8lb 9 1/2oz. luckily for us, … Continued

‘I’ve Always Loved Music and Singing’- Charlie Turner

Charlie was born with Hypoplastic Left Heart Syndrome in 2003, but he hasn’t let that stop him from doing what he loves: acting and singing. He made his stage debut in 2013 in Whistle Down the Wind and has since joined the musical theatre group, learning all about singing, dancing and acting. Although he notes … Continued

‘I Get Really Frustrated and Unhappy…Because I Can’t Represent The School’- Hannah’s Story

Hello my name is Hannah and I’m 10 years old and I have a handmade heart. The name of my heart condition is hypoplastic left heart syndrome, which means that only half of my heart works. I was very poorly when I was born and I’ve had three heart operation and three cardiac catheters. I’m … Continued

‘I Know That I Have A Special Handmade Heart’- Tia’s Story

I feel sad about my heart, I want it to get better, I know that I have a special handmade heart and that the doctors did amazing things to make it work and keep me alive. I had two open heart surgeries when I was a baby and was on a life support machine. I … Continued

‘I’m Just Your Typical Lad Or Monkey’- Enzo’s Story

Hello, my name is Enzo and I’m nine years old. I was born with hypoplastic left heart syndrome, also referred to as half a working heart. Here is a little story from me. I’m just your typical lad or monkey as my mum would put it. I enjoy school and science is my favourite subject. … Continued

‘I Am Normal Like All The Other Children But I Am Different Inside’- Pearl’s Story

Hi, my name is Pearl. I am 7 years old and I was born with half a heart. I nearly died when I was a baby but the doctors saved my life. I have had 3 big operations and 1 small one. I can do every sport and play every game as long as I … Continued

‘My Dodgy Heart’- Jago’ Story

Hello.  My name is Jago and I am 7 years old.  I’ve got a bit of a dodgy heart and I’ve been in hospital a few times.  I am going to have a pacemaker next week. Having a poorly heart makes me get very tired.  I will be less tired when I get my pacemaker. … Continued

‘My Mummy Was Told That I Had A Special Heart’- Dillon’s Story

When I was born my Mummy was told that I had a special heart that needed fixing. My Mummy says that I was very poorly and had a big operation on my heart and had to spend the first 10 weeks of my life in hospital. I must have been very brave because I have … Continued

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    Rhys here is 9 and has Hypoplastic Left Heart Syndrome. Rhys just celebrated his 4 year heart-iversary, 4 years since his Fontan operation. Well done, you've got this!Shared by LHM member Terri, thank you ❤ ... See MoreSee Less

    2 hours ago  ·  

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    This Black History Month we would love to tell you about Vivien Thomas, a cardiologist who played a crucial role in the development of treatment for children born with Tetralogy of Fallot, also known as Blue Baby Syndrome, and other conditions. Thomas pioneered an operation now known as the Blalock-Thomas-Taussig shunt. At the time, Thomas was disregarded because of racism and prejudice against his lack of an academic background, sadly it was not until the 1980’s that the procedure included his name. The procedure is still used to this day and has helped many of our members. Join us to celebrate this amazing man. ... See MoreSee Less

    6 hours ago  ·  

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