Sharing our experiences of parenting a child with a congenital heart defect
Since the day we found out about our daughter’s heart condition, the support and information we have received through various organisations has been invaluable in helping us through our heart family journey. We quickly realised that we were not alone in the journey, that there were others who had travelled it too, as well as… Read More
Regular readers of my blog will know that we’re a family who love to get out and about as much as possible. My philosophy tends to be along the lines of “there’s no such thing as bad weather, just inappropriate clothing” which I usually follow, within sensible limits weather-wise. I am always amazed by how… Read More
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
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
1) What it means to be a heart parent It took just seven words to change my entire life. Seven words which broke my heart, shattered my dreams and turned my world upside down. Seven words from which I emerged a stronger and more compassionate person. “There’s something wrong with the baby’s heart.” My… Read More
The first time you take your baby home from the hospital is a milestone moment for everyone, but so much more so when it is a moment that almost up until when it finally happens, you hardly dare to dream it could. The last time I had stepped foot in my house had been four… Read More
Heart to Heart linky was set up to help other heart families share their stories and experiences in order to help support each other as a community. It opens on the 15th of each month and stays open for a week so there is plenty of time to share your CHD-related posts. You can share… Read More