Heart Heroes North Wales

Gemma’s story:

On 18 March 2019 I was so excited about going for my 20 week scan, little did I know this would be the day that my life would change forever and that I would become a Heart mum. Everything looked good and the heart was the last thing she did, I started to know something wasn’t right when she kept looking and asking me to change positions. A couple of days later baby was diagnosed with CCTGA, VSD, sub-pulmonary stenosis, slender pulmonary arteries and in sinus rhythm. It felt a relief that I knew what the diagnosis was but also a huge worry.
Mabon was born on 30 July, a week early and weighing a good 8lb 4oz. 
We were taken to #AlderHey the following day and they confirmed the diagnosis but that he was doing well. He only spent a couple of days in SCBU before going home. A nurse would come once a week to check his sats and these were good up until the morning of the 28 August when they were lower than normal and we had to go into our local children’s ward. This was when he started to deteriorate and the intensive care transfer team from Alder Hey came to get him. During this time I felt so new to the CHD journey, not knowing what to do or what to expect. After about a week Mabon became very ill and had a peri arrest on the cardiac ward and was rushed to PICU; the worst day of my life. A couple of days later he needed his first open heart surgery to save his life, this is when he had his BT shunt. Mabon made a great recovery after being so close to losing him.
He had his second open heart surgery in Sept 2020, to take down the BT shunt and to have the Glenn procedure. After this he had a number of issues with fluid and he spent a number of months in and out of Alder Hey having chest drains until they put in a stent in January 2021. This was such a tough time for us as a family and I didn’t know any other Heart mums or about #HeartHeroes. Mabon has since been doing well but is waiting for his next planned surgery which will be the Fontan or Rastelli.