“To have any chance in life, he would have to face 3 operations” – Charlene’s Story

15 years ago I was given the most difficult choice of my life. I carried my baby for 8 months and at 5 months I was told the most heart-breaking thing imaginable, I was told that this beautiful boy only had half a working heart.

To have any chance in life, he would have to face 3 operations by the age of 3 years old and a heart transplant throughout the years of life. I was told that survival rate through birth was only 20% and the survival rate of getting through a 7 hour open heart operation at Just 14 hours old was only 5%.

I was told the survival rate of making it to the age of 6 was 50/50 and I was also told the easiest and less painful option I had was to terminate this pregnancy. That decision was not easy, many thoughts rushed through my head, I struggled to cope with the situation. But I knew deep down my decision was already made and I do not regret the choices I have made.

On the 25.05.05 I gave birth to the most incredible, most handsome baby boy. I never got the chance to cradle him like most mothers do, I never got the chance to feed him his first bottle and I never got the chance to change his first nappy. So many things I missed out on in the first 2 months of his life as I stood by his bedside and watched him fight for survival with every tiny little breath he took.

I will never forget the day I walked into ICU and he laid there helplessly and the nurse came running over to me with excitement… for the first time in many weeks he opened his beautiful big shiny eyes, and that overwhelming feeling that rushed through my body I will never forget.

I will never forget as each day that went by, slowly but surely, tube by tube, wire by wire leaving my babies tiny little body. I will never forget that day when I got to hold him in my arms and give him a real cuddle for the very first time. I will never forget the day when I got to give him his first bath and I will never forget the day I got to take my beautiful baby boy home.

Now 15 years later, he is here giving me the biggest headache, being the biggest pain in my backside, but I love him so much. Although we are in lockdown, I really hope he has the best birthday ever.

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    “Thank you very much for Chris' card. I cannot believe he is 18 and am so proud of the lovely young man he has become, overcoming the many challenges we have faced over the years, especially in the first 4 to 5 years. Thank you Little hearts matter for always being there.”

    Thank you to Chris and mum Philippa for sharing this fantastic news with us, we hope this brings some inspiration to the many families out there who are at the start of their half a heart journey.

    With YOUR help, we can continue to support the amazing young adults living with a single ventricle heart today, just like Chris here. All you need to do spare 30 seconds of your time every day to vote for LHM in Persimmon’s ‘Building Futures’ initiative.

    They don’t ask for any details, you simply click our logo on this page; biy.ly/support-lhm

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    18 hours ago  ·  

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    So pleased to see Amelia here, DILV, enjoying some cycling along with her sister Evie…

    “We’ve been doing a lot of cycling this week as both girls have grown in confidence. I’m amazed at Amelia’s stamina on the bike, doing much more exercise than she’s ever done. This is the girl that needs a buggy to get home from school (in normal life). She’s found a sport that she can comfortably do. She says she feels free when she’s cycling. That makes me happy and sad at the same time ❤ “Cycling makes me feel free, happy and like nothing is in my way””

    Riding a bike is great exercise for children, teenagers and adults with half a working heart. It helps get you from A to B but is also is supported exercise for the lower body and therefore provides good support for blood returning to the lungs. There are many incentives to help get you on a bike, at the moment.

    Learn more by jumping to our ‘get fit for winter’ resource here: www.lhm.org.uk/information/lifestyle-information/get-fit-for-winter/
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    1 day ago  ·  

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