I have seen this essay shared many times by other heart parents, and parents of children with additional medical needs. It is a beautifully written piece and one which helps describe how I felt when we were first told about our daughter’s heart, and our feelings in the weeks and months following the diagnosis. … Read More
This week’s word of the week is:It’s been quite a significant week for my two girls. On Sunday, Sophie sat without being supported for the very first time during crèche at church. Whilst she still tends to loll to one side and fall over, she is managing to sit by herself for longer and longer… Read More
Feeding is something that can be a big cause of concern for parents of children with CHD. They often require more calories than heart-healthy children but can get quite tired and struggle to take in enough calories. Whilst Jessica was breastfed as a baby, she was not able to get enough calories from my milk… Read More
We’ve spent quite a lot of time in hospital over the last three years. Jessica has been under the care of six different hospitals since she was born for various reasons. She was born at Princess Anne Hospital in Southampton. Shortly after birth she was transferred to Southampton General Hospital. This is where her heart… Read More
Like many other children with CHD, Jessica has needed several operations. Her heart can never be fixed – surgery can only help improve her heart function. The usual surgical pathway for children with hypoplastic left heart syndrome (HLHS) involves three procedures. These are the Norwood procedure, Glenn procedure and the Fontan completion. The aim of… Read More
It’s three years today since we were told that Jessica was unlikely to be suitable for surgery and that she would be offered comfort care after she was born. However, a throwaway comment about in-utero surgery at that appointment led us to the first step in Jessica’s journey. This pioneering procedure at 28 weeks’ gestation… Read More
This week (12-18 May) is Children’s Heart Week. I have two beautiful daughters, one of whom has a severe and complex congenital heart defect (CHD) called hypoplastic left heart syndrome (HLHS). This means that the left side of her heart is severely underdeveloped. We first discovered that Jessica’s heart had not developed correctly at our… Read More
