Tag Archives: hearttoheart

CHD from a parent’s perspective – is it wrong to share?

I read a lot of blogs from heart parents and parents of children with additional needs. Occasionally, I come across blogs and articles written from the perspective of children or adults who are living with CHD or another medical condition, or who have additional needs. Every so often, there is an article which shocks me and makes me stop and think; one in which there is harsh criticism of parents sharing their child’s story when it is not their story to share.… Read more

I’m a heart mummy but I’m not superhuman

Being a heart mummy can be perceived sometimes as being a bit of a super mummy.  I am often told “you’re so brave”, “you’re so strong”, “I don’t know how you cope with it all” and whilst it is true that I try to be brave and I try to be strong, there have also been many times when I feel anything but brave or strong, and I’m not entirely sure how I cope with it all either.… 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