The Irish Heart Foundation has launched a campaign to stop the destruction of heel prick tests for newborn babies carried out between 1984 and 2002 and CRY is supporting this campaign. The Newborn Screening Card blood samples are set to be destroyed on 31 March to comply with EU data protection laws.
The cards could save the lives of extended family members of more than 1,000 young victims of Sudden Cardiac Death. If the Newborn Screening Card Blood samples of people who have died from SADS can be tested, they can determine what the cause of death was. Approximately one third of the people who died would have suffered from Long QT Syndrome. This disease can be inherited, so if this is found to be the cause of death, it means the family will need to be tested as they could also have the condition.
Within CRY, we provide a free screening service to families who have been affected by sudden cardiac death and would advise anyone who has been affected by SADS within their immediate family to be screened regardless of whether they get the deceased persons card or not.
Only 12% of the population were aware of the plans to dispose of the cards. Following a complaint to the Data Protection Commissioner in 2009, a decision was made on legal and ethical grounds to destroy the cards.
A subsequent policy review recommended that samples more than ten years old be destroyed unless their owners or guardians request their return. The HSE deadline for this request has been set at 31 March, Easter Sunday, after which all other samples will be incinerated.
Since 1966, every child born in the State was subjected to a heel prick. Although water damage destroyed cards from 1966 to 1984, there are still approximately one million cards covered from 1984 to 2002.
The IHF’s campaign can be found online at stopthedestructionnow.com, while the HSE can be contacted at 1850-24-1850 or log on to newbornscreening.ie.
If someone in your family has died at a young age from sudden cardiac death, please contact the HSE to get their card.