told by mum Chris

Our journey into the heart world started on 28th October 1985. Richard arrived at 5.45am. We hadn’t realised that the chaos he caused being born would follow him through his life! Brow presentation, which is undeliverable, but an absolutely super Senior registrar managed to turn his head allowing him to be delivered via ventouse delivery. He was diagnosed as having Down Syndrome at 3 days but by that time he was in special care with septicemia! 

We saw the cardiologist at 9 days who told us that apart from Down Syndrome his heart was fine! We were discharged home on bonfire night but 3 days later he went into cardiac failure!

Richard was subsequently diagnosed with an Atrial septal defect (ASD), Ventricular septal defect (VSD) and Persistent Ductus Arteriosus (PDA). The ASD closed itself but let him with bundle branch block so he has a very slow heart rate.

He had cardiac surgery at Great Ormand Street Hospital (GOSH) in January 1989. But before this he spent almost the first two years juggling between Cardiff and GOSH. He had Hirschsprung’s disease and had repeated Clostridium Diffcile infections.

Richards is now 38 years old and his VSD has reopened, and he now has a dilated Aortic arch but no surgery needed as yet.

Following COVID, our daughter developed palpitations and was subsequently diagnosed with Cardiomyopathy which is genetic and her daughter has Wolfe Parkinson White Syndrome. She has a very successful ablation in November 2023 at Southampton.

If you have been affected by any of the issues raised in this content you can contact info@chfed.org.uk or 0300 561 0065.