Tag Archives: HLHS

Me, hubby, Jessica and Sophie in the photo booth at the Friends of PICU party

Me and Mine – November

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 to Christmas Day!… Read more

This is our normal

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 and could I go and pick her up.  Unwell in this case translated as being blue and jittery.  When I got to school, Jessica was lying down on the floor in her classroom, wrapped in her coat to warm her up with the teaching assistant holding her hand and telling her a story, while watching her closely.  Jessica’s lips and cheeks were purple although thankfully she no longer appeared jittery.… Read more

My Sunday Photo 17/07/16

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 family fun day were the gorgeous Willow and her family.  Willow and Jessica both have hypoplastic left heart syndrome and were on the ward together as babies.  It was lovely to see the two girls together again at a fun event and doing so well – two little miracles together.… Read more

Trusting the medical team and the uncertainty of change - reflection on a change of cardiac consultant - Little Hearts, Big Love

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

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 hypoplastic left heart syndrome (HLHS).… Read more

Ten facts about HLHS and my heart child

My daughter Jessica has a complex congenital heart defect called hypoplastic left heart syndrome (HLHS) which basically means that she has half a working heart. Here are ten facts about HLHS and my heart child:

Ten facts about HLHS and my heart child - Little Hearts, Big Love

1) HLHS occurs in approximately 1 in every 5000 babies.

2) It is a condition where the left side of the heart is significantly underdeveloped, preventing oxygenated blood from going from the heart to the body.… Read more