PARENTS OF VICTIMS of sudden cardiac death have been urged to request the return of their child’s newborn screening card before it is destroyed at the end of this week.
The Irish Heart Foundation has said the heel prick tests contain “precious blood samples” that could be genetically tested to identify underlying heart conditions.
The HSE has implemented a deadline of 31 March for requests for the return of the Guthrie cards. Due to Data Protection concerns, all cards held for 10 years or more (without consent) are earmarked for destruction.
The charity has launched an urgent national appeal to alert families affected by SCD to the Easter Sunday cut-off. They say families could lose “the only chance left to them to achieve a genetic diagnosis”.
“Such a genetic diagnosis would allow extended family members to be tested and potentially save more lives by affording them the opportunity to take steps to reduce their risk of sudden cardiac death,” the IHF said in a statement.
Chief executive Barry Dempsey added, “Our Helpline nurses have received calls from families all over the country on this issue, many of whom carry around the daily fear of something happening to their remaining children. The only hope for these parents is that these small heel prick test cards can be used to isolate a faulty gene that allows their children and extended family to be tested for an underlying condition. Only then will these families know their loved ones are safe and their family is protected from another sudden loss.”
About 80 young Irish people die each year because of SCD.
Those who want their child’s newborn screening cards returned can visit the HSE website, www.newbornscreening.ie for further details. The campaign has more details on www.stopthedestructionnow.com and on Twitter through the hashtag #stopthedestructionnow.
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