Children’s heart charity opens its doors in North Wales

A charity which supports families of children with serious heart conditions has set up a new hub so it can help people in North Wales.

Heart Heroes has opened a group to cover Flintshire, Wrexham, Denbighshire, Conwy, Gwynedd and Anglesey,  so it can help even more families, with its regular events, support groups, and signposting services.

The North Wales Hub is being run by Gemma Williams, from Anglesey, whose son, Mabon, aged three, was diagnosed with a heart condition at Gemma’s 20 week pregnancy scan.

Gemma was told her baby had Congenitally Corrected Transposition of the Great Arteries, which is a rare defect where the heart’s lower chambers are reversed.

When he was born, Mabon seemed to be faring well and only spent two days in the special care baby unit. Once home, he had regular visits from a nurse, to check on his progress.

But he then became poorly and was admitted first to a local children’s ward and then rushed to Alder Hey in Liverpool where, at just five weeks old, he underwent emergency open heart surgery.

“He started to deteriorate and the intensive care transfer team from Alder Hey Children’s Hospital came to get him,” said Gemma.

“It was the worst time ever as he was taken by ambulance and straight to the high dependency unit. During this time, I felt so new to the congenital heart disease 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, this was the worst day of my life.”

Luckily, Mabon pulled through, although he needed surgery again at 13 months and he is due to have a third round, to further correct the heart condition he lives with.

“This was such a tough time for us as a family and a time that I didn’t know any other heart mums or about Heart Heroes,” said Gemma, who also has a daughter, four-year-old Elsi. “I really want to get the word out to other parents that there is help and support out there.”

Heart Heroes’ monthly meetings in North Wales are being held at different venues in the region, and give children and their families a chance to get together and to share experiences. The next meeting is in September, date and venue to be confirmed.

“Our get togethers give us a chance to chat and get to know one another. Most of the children, like Mabon, will be treated at Alder Hey so we can talk about that, how we’ve found our experience and support one another.

“Being involved with Heart Heroes has made me feel like I am not on my own, and it gives support for Mabon and also for Elsi, because I know it has affected her too.”

Heart Heroes Founder Kelly Cornish said: “Heart Heroes supports families of children living with heart conditions and we include the children and their siblings in all our events.”

“By opening the North Wales centre, we can reach more families by putting on local events for them, where parents meet and support each other.”

To find out more about Heart Heroes North Wales Hub, and the events, email Gemma at northwales@heartheroes.co.uk, or visit https://heartheroes.co.uk/.