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). As a mother of a child who has HLHS, I was quite interested to read more about this research.

Hypoplastic left heart syndrome is a complex congenital heart defect where the left side of the heart is severely underdeveloped. Without surgery, babies born with HLHS will die shortly after birth. In order for children born with HLHS to be able to survive into adulthood, they will need to undergo at least three complex heart surgeries. These surgeries basically “replumb” the heart to allow the right side of the heart to do all the work, effectively meaning that people who have HLHS effectively live their lives with half a working heart.

35 years ago, the first successful surgery took place on a baby with HLHS – the Norwood procedure, named after Dr William Norwood, who pioneered this surgery. The Norwood procedure is usually the first surgery that a baby with HLHS undergoes, normally being performed before the baby is a couple of weeks’ old. However, for some babies, like Jessica, a different surgery may be performed before, or instead of, the Norwood. In Jessica’s case, her particular anatomy meant that she was higher-risk for the Norwood procedure and so she had a procedure called the hybrid procedure to give her time to grow, and her Norwood procedure took place when she was three months old.

Each child’s heart anatomy is different. The surgeries for HLHS are high-risk and complicated, and sadly some children will not survive the procedure, whilst others may have ongoing health problems resulting from surgery. It can be difficult to know exactly which surgical technique may be best for each individual child and there is very little evidence on the pros and cons of each.

The research that is being funded by Action Medical Research focuses on using analysis of MRI scans of more than 150 babies with HLHS to produce computer-generated 3D models of each child’s heart and the main blood vessel going to the body – the aorta. They can then compare models of the child’s heart before and after surgery, looking at the blood flow through the heart and aorta to analyse the benefits and drawbacks of different surgical techniques. This will help surgical teams to plan treatment options for babies born with HLHS and therefore hopefully will improve outcomes for them.

To find out more about Action Medical Research and this research, please click here.

I have written this post to help raise awareness of this research as part of a series of posts for Heart Week 2016. This is a cause which is very close to my heart and I have not been compensated in any way for writing and sharing this post. Action Medical Research is a registered charity (charity no. 208701)