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Tag Archives: HLHS

Preparing my child for heart surgery

19/10/201712/09/2018
An illustration of Jessica having an ECG

Yesterday we got the call that we’d been expecting and dreading. The date for Jessica’s next heart surgery. My world has shrunk to a few short weeks – a date in the calendar that I cannot see beyond. I know it has to happen. I know she needs this surgery, and that all being well,… Read More

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Six years on: our journey as a heart family

03/05/201703/05/2017
Jessica recovering from her third open-heart surgery

Six years on. Six years since the scan that changed our lives completely. The start of our journey as a heart family. One minute we were expecting a normal healthy baby. The next, we were heart parents. Our lives turned upside-down; excitement replaced by fear. Would our baby survive? What would the future hold? And… Read More

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Me and Mine – November 2016

30/11/201630/05/2018
Me, hubby, Jessica, Sophie and Monty with Father Christmas

I can’t quite believe that we’re at the end of November already – and Christmas is now just around the corner! That said, we’ve started to get in the festive spirit already – the girls have seen Father Christmas twice already and will be seeing him at least a couple more times in the run-up… Read More

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This is our normal

19/10/201612/11/2016

Most of the time our family life ticks along quite normally and then every so often, we hit a little bump which brings a realisation that what’s normal for us may not be that normal after all.  Yesterday morning was one of those times.  A phone call from school to say that Jessica was unwell… Read More

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My Sunday Photo 17/07/16

16/07/201629/07/2016

Whilst recovering from each of her heart surgeries, Jessica was cared for on the paediatric intensive care unit at Southampton General Hospital.  Yesterday we attended the Friends of PICU Family Fun Day to help raise money to support children on the unit and their parents. The first people we saw on our arrival at the… Read More

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Action Medical Research: funding new research to help improve surgery for babies with HLHS

10/02/201609/02/2016

A few weeks ago, I was contacted by Action Medical Research, a charity which funds medical research on children’s disease. They wanted to use a photo of Jessica in their supporter magazine to highlight the research that they are jointly funding with Great Ormond Street Hospital Children’s Charity into improving surgery for babies born with… Read More

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Ten facts about HLHS and my heart child

09/02/201619/10/2017
Ten facts about HLHS and my heart child - Little Hearts, Big Love

My daughter Jessica has a complex congenital heart defect called hypoplastic left heart syndrome (HLHS). Children born with HLHS effectively have only half a working heart. Here are ten facts about HLHS and my heart child:   1) HLHS occurs in approximately 1 in every 5000 babies.   2) It is a condition where the… Read More

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I'm Louise, mummy of three - Jessica, forever six, who was born with half a heart and lives on in mine; and heart-healthy Sophie (born 2013) and Thomas (born 2018). I blog about child loss, CHD, days out, crafts and family life.

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