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CHD Awareness week, not just Valentines

Sunday, 11 February 2018  |  Mummy and Little Me


CHD Awareness Week 7-14th February

This week many families like my own will be celebrating not just Valentine’s and Pancake Day but CHD awareness week.

For those that don’t know it is a week where we celebrate all things Congenital Heart Defect (CHD) and the many forms that takes. We honour the heart warriors, past and present and their families we look back on their journeys and we raise awareness for the future.

We share our stories in hope to educate others, and to warn others of the dangers. According to the charity Tiny Tickers, over 1000 babies go home from hospital with an undiagnosed heart condition.

We were some of the lucky ones, not that it felt like that at the time but looking back I am glad we were still in hospital when Elijah displayed symptoms of heart failure.

He began to have ‘dusky’ episodes this means that he went a purple/blue colour and was admitted to the Neo Natal Intensive Care Unit. He was diagnosed with Tetralogy of Fallot, CHD within 24 hours of being born.

This meant that he had multiple structural abnormalities wrong with his heart causing him issues. He would later have surgery to repair these at 6 months old down at Great Ormond Street. He had a full repair via open heart surgery and we were discharged 5 days later.

Elijah now, as many of you know that follow the blogs a happy, healthy and ‘normal’ (is there such a thing?) three-year-old. We have annual check-ups with the consultants from GOSH and Elijah will have to be monitored and managed for the rest of his life.

At present we are on no restrictions, no medication but we are looking at a further surgery in his early teens to replace an artificial valve that was fitted depending on how he grows. For now, we are grateful, but if it wasn’t for weeks like this, for pioneers in the field, we may be telling a very different story.

We live in an age where medicine has revolutionised heart conditions, but we could always be doing more.

More research, more tests, more surgery techniques, more support. Therefore, I will continue to speak about our story, to raise awareness and to point people in the right direction to do so.

I want others to be able to have the same chance that Elijah has had.

1 in 111 babies are born with CHD, my son was that singular statistic.

Around 12 babies today will be born with CHD in the UK alone.

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