Young people have lost their lives because of a lack of resources for treating congenital heart disease, the chairwoman of Heart Children Ireland has said.
Jennifer McCarron was speaking in Dublin on Wednesday at an event which called for the Government to provide funding for the organisation so it can meet demand for its “much-needed services” for children and adults affected by the condition.
“There are only excuses and none of them are acceptable,” she said.
“Young people have lost their lives because of a lack of resources [for congenital heart disease] and young people will continue to lose their lives because of a lack of resources and that is not acceptable.”
Congenital heart disease is a birth defect which affects the structure of the heart.
Many children affected by the condition require multiple surgeries and life-long medical support.
In addition, they have to deal with the social and emotional consequences of their conditions.
Heart Children Ireland funds a specialised psychology service for those with congenital heart disease and their families.
The service includes individual counselling, parenting groups and information days.
Heart Children Ireland chief executive Margaret Rogers said its psychological support service is seeing increased demand from families and it is unable to meet demand in the absence of Government funding.
Case study
Trish Purcell’s 10-year-old daughter Caitríona, from Co Carlow, was diagnosed with congenital heart disease after she was born.
“She was literally a blue baby,” said Ms Purcell.
“Her oxygen levels are better now, which gives her a better quality of life.
“She still tires quite easily but she can do most things than any child can do. She is limited a little bit. We’ve adjusted our lifestyle to suit her and it’s working for us.
“She’s had three open heart surgeries to date and a number of other procedures.
“It’s a waiting game really and a condition which means she’s going to be attending hospital for life.
“We’ve spent a lot of time travelling up and down to Dublin. She’s doing quite well but there’s constant monitoring and medication.
“We have to watch out for different signs, like if she’s getting tired, as that could mean the heart is starting to weaken.
“In a situation like that, it’s back to the hospital to make sure everything is okay.
“She has a whole new plumbing system and only uses half her heart, but hopefully it will hold out for a long, long time. The prognosis down the road is a possible heart transplant.
“We didn’t know what we were dealing with [when she was born] and the first few days were very frightening for us because we [didn’t] know if our child was going to make it or not.
“Medication and surgeries [are] how she’s going to survive through life.”
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