IHF: Newborn screening cards could have genetic data that saves lives

A mother whose son died four years ago from sudden cardiac death is backing a campaign by the Irish Heart Foundation to halt the destruction of life-saving blood sample cards.

The IHF says the newborn screening card samples, which are due to be destroyed soon, could save the lives of family members of more than 1,000 young victims of sudden cardiac death between 1984 and 2002.

Sally Hegarty, whose son Rory, 16, died in 2009, said he had an inherited genetic condition and his card could hold the key to establishing if her other two children, Sadhbh and Neil, are at risk.

Ms Hegarty, from Dublin, found her son dead in bed the morning after he played a Gaelic football match.

“I have been assured my children are low risk but this is poor comfort to me — I don’t want any risk,” she said yesterday.

She said the screening card held the only DNA she had of Rory and she hoped that in the future experts would be able to isolate the faulty gene and her children could be tested to see if they had it.

The IHF is urging people to seek the return of more than 1m cards before their planned destruction by the HSE at the end of the month to comply with EU data protection laws.

IHF medical director and consultant cardiologist Dr Angie Brown said the cards represented a unique bank of vital genetic data.

The charity’s chief executive, Barry Dempsey, said the issue could be dealt with in legislation that would take account of both data protection requirements and the need to protect the blood samples of sudden cardiac death victims.