A conference is taking place today in Dublin organised by the charity 'Heart Children' for young people with congenital heart disease and their families.
'The Beat Goes On' conference is part of Global Congenital Heart Disease Awareness Month.
Kate Phelan from Ballinameela told WLR about her 16-month-old son Daithí who has the condition.
"When he was six weeks old, at a routine GP check," Kate told Déise Today this week, "our GP just had some concerns that he wasn't doing so well and asked that we get checked out down in University Hospital Waterford.
"Suddenly, it just moved quite quickly to there being an ambulance called from Crumlin to come because he would need emergency specialised cardiac care.
"That, I suppose, was the moment of alarm for us."
Baby Daithí was subsequently diagnosed with a few different defects of the heart and one of them was treated as emergency, which was a narrowing in the aorta of his heart.
"He was going into heart failure at that time," Kate explained, "and we were told that he would require emergency surgery to treat that.
"That actually happened the next day at Crumlin."
Kate says sharing stories and information with other people affected by Congenital Heart Disease has been very helpful for her and her family.
It is estimated by Heart Children that there are almost 19,000 people living with CHD in Ireland and approximately 2,421 are complex cases.
"There are online webinars that Heart Children - the charity - offers and we have joined in on some of those," Kate says.
"To be in a space with other parents that have kind of had a similar journey, it's just really helpful."
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