‘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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    Antenatal Support

    Many families first find Little Hearts Matter just after they have learnt that their unborn baby has half a working heart. The Little Hearts Matter team are here to help make any diagnosis and treatment information easier to understand and will always try to help new families cope with the emotional choices needed during pregnancy. Following a call to the support line you will be linked with a member of the antenatal support team.

    Suzie has been with the charity since its inception, working in the LHM office for over 20 years.. She used to be a Congenital Cardiac Specialist Nurse so will listen to all callers’ concerns and work to help them understand what their medical team have told them, especially following a new diagnosis or treatment plan. Although she is unable to give individual medical advice she will help a caller to draw up a list of questions for their own medical team. She also works to help families to access support for a child in school or apply for benefits and she works to give a general overview of life with a congenital heart condition and the support a child or family may need at any stage of their journey.

    For help with an antenatal diagnosis of half a working heart, call 0121 455 8982 ❤️
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