Tag Archives: CHD

My Sunday Photo 19/02/17

Being a heart family brings many challenges and struggles, but it has also brought many moments of joy too. Meeting other heart families, building friendships and seeing Jessica bond with other heart children has been one of the biggest positives of this journey. To be able to talk to another family who understands the rollercoaster ride that comes with a CHD diagnosis makes the journey a little easier.… Read more

Travelling to the 12 corners of the UK in a Tuk Tuk for Healing Little Hearts

Our family challenge last year was to travel from Land’s End to John O’Groats on public transport. Last month, we attended the Land’s End-John O’Groats Association awards dinner in Torquay where we were presented with our certificates and Sophie won the Jack Adams/Richard Elloway trophy for being the youngest person to do the journey in 2016.… Read more

Heart Month 2017: Jessica’s Journey – our CHD story

February is Heart Month – a month of raising awareness about congenital heart defects, the charities that help support heart children and their families and sharing stories about life with CHD. As many of my blog readers will know, my daughter Jessica was born with a complex CHD called hypoplastic left heart syndrome (HLHS).  This heart condition basically means that she has half a working heart.  Jessica has undergone several heart surgeries since her heart condition was first picked up at my 20 week scan.… Read more

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

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