Blog

Don’t lose sight of your mental health. It is important. YOU are important.

by Karen Morgan “The world breaks everyone, and afterward, some are strong at the broken places.”– Ernest Hemmingway In the UK around 1 in 125 babies are born with congenital heart disease (CHD). I don’t know about you, but that’s a higher number than I expected. Sometimes it’s even phrased as ‘the most common congenital…

Our Journey with Hypoplastic Left Heart Syndrome

And why I created a free app to help families like mine by Jessica Barker, mum of Maisie and Florence, and founder of Friendili. Having a baby is exciting – particularly when it’s your first. Reading about parenthood, going to antenatal classes and carefully choosing all the things for the nursery are all part of…

Surgery, scrap-booking and a six year old superhero

By Jennie Jones This story is about how we helped our son Rhys to prepare for his last operation and also advice for other parents who have school age children who are preparing for surgery. This is Rhys. He is eight years old and, like any heart parent, we think he’s amazing and a super…

Support & Advice for Cardiac Nurse Specialists

By our Head of Training, Anne Rhodes. One group of health professionals that are quietly, and constantly on the frontline of CHD treatment, care and support are the Cardiac Nurse Specialists (CNS). CNS’s are teams of experienced paediatric cardiac nurses who can support families with an antenatal diagnosis. They often work in very difficult and…

The things I would say…

By Sophie Williams My son Tomasz was born in 2018 with Transposition of the Great Arteries. He was treated at Alder Hey Hospital and spent almost eight weeks there. He is now a happy little two year old. Here is what present-day-me would say to comfort myself after my 20 week scan.