Mothers who lost children to sudden cardiac death (SCD) have told an Oireachtas health committee of the "hell on earth" they experienced because of shortfalls in the medical services.
The Sudden Cardiac Death (in the Young) Support Group spoke of long delays in getting autopsy results; GPs inadequately trained in SCD; and families leaving the hospital with no information about what had happened and why.
The group was set up by bereaved parents this year in association with The Irish Heart Foundation. Its members told the committee that at least one or two people under 40 died every week when their hearts suddenly stop.
Some recent high-profile deaths included sportsmen such as Tyrone footballer Cormac McAnallen.
Mary Vasseghi, chairwoman of the group, lost her son Darius (18) a year ago. She told the committee: "The best chosen words cannot describe what happens to a person when a child dies in these circumstances.
"You believe you have a healthy child, the child him or herself thinks they are healthy, and death comes in seconds out of the blue."
Her son appeared to be very healthy but had an undetected heart condition. She said parents often had "crushing feelings of guilt", blaming themselves for overlooking possible symptoms. Family doctors were not knowledgeable in SCD, and were inadequately trained.
The committee heard that incorrect diagnoses of the causes of death were sometimes made and second opinions had to be sought from abroad."There is often a long delay in receiving autopsy results - months to years," Ms Vasseghi said. "This wait is totally indescribable and is called hell on earth by many."
There was no dedicated screening centre and families were seen in unsuitable clinics where overstretched medical staff were doing their best.
