‘Our Little Soldier’- Sarah’s Story

My husband Dave and I found out at our 20 week scan that we were having a boy. We did not anticipate the news that would follow. The sonogram showed that our baby had a heart defect but without further scans they could not see what. Several days later just after Christmas 2009 we were invited back to hospital for further scans which revealed our baby boy had hypoplastic left heart syndrome. We were ushered into a side room and advised to abort. We decided to get further information from the Evelina Children’s hospital London.

The consultant was very thorough and reassured us that our baby had 80% chance of survival and told us many children live long and happy lives but would need 3 or more open heart surgeries to help them survive.

On the 22nd April our baby boy was born at St Thomas’ Hospital, London. He was taken straight to special care then transferred next door to the Evelina. We named him Joshua because he was a fighter!

4 days after Joshua was born he underwent his 1st open heart surgery. He did amazingly and recovered well. Joshua had his chest closed 5 days later after having kidney dialysis to help his organs recover. He was moved to the ward on day 8 and Home just 14 days after he was born!

Joshua thrived and gained weight well. At his 6 week review the consultant found a large leak on his tricuspid valve and Joshua was admitted to hospital for a further 7 days to get it under control. In this time Joshua smiled for the first time and started doing everything a normal baby did.

When Joshua was 10 weeks old he woke one morning blue and lifeless. He wouldn’t feed and slept constantly. Alarm bells rang and we took him straight to hospital to be checked. The doctors assured us it was nothing serious and probably a bug. I knew as his mother it was far worse! The retrieval team from the Evelina picked him up and put Joshua straight onto life support, he was seriously poorly.

Joshua’s tricuspid valve had ruptured and he was in serious heart failure. 3 days later the doctors and surgeons worked tirelessly to repair the damage. It was an overall success. Unfortunately it was short lived as he repair came undone the following day. Joshua was rushed to theatre for his 3rd open heart surgery which was also a success. Our shock came just 3 days later when we were called early at the Ronald McDonald house and told to come straight in. My heart nearly broke at that moment however we did not know at this point to severity of his condition.

After reaching Joshua were sat down by the doctors and told Joshua was not going to survive. His organs were giving up and his little foot and hand had gone black from the lack of oxygen pumping round his body. We got him christened and family arrived through the day to join us. At 4.30 we said our goodbyes and let our little soldier go in our arms.

11 weeks we had Joshua – it was short but we made as many memories as we could.

Since Joshua passed away, 8 years ago this month, we have raised over £20,000 for various charities ( Little Hearts Matter, ECHO & the Evelina). I have skydived twice, done various runs including a half marathon, 86 mile bike ride, Balls and various other activities. We will never stop celebrating his life and raising money in his memory.



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    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.

    University Hospital Southampton NHS Foundation Trust
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    1 day ago  ·  

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