NEWBORN BABIES WILL soon be tested for Spinal Muscular Atrophy (SMA) as part of the National Newborn Bloodspot Screening Programme, commonly known as the heel prick test.

The heel prick test currently involves testing newborns for nine rare but serious conditions by taking some blood from their foot a few days after they are born.

SMA campaigners and advocates have long called for the condition to be added to this list. Health Minister Stephen Donnelly announced today that he had asked the HSE to add the condition to the test.

The move comes following a recommendation from the National Screening Advisory Committee.

“As Minister, I understand the impact these rare but serious conditions have on children and their families. Screening is one step which can significantly improve the outcomes for children and is why I have been consistent in my support for expanding the National Newborn Bloodspot Screening Programme since assuming office,” Donnelly said in a statement.

Donnelly said that he had written to the HSE requesting that testing for SMA be added. The minister said that a number of important steps had to be taken, and that he hoped the condition would be added to the list by next year.

SMA is a degenerative disease, the most severe form of which is SMA Type I, which is also the most common. Without treatment and ventilatory support, 90% of children with SMA Type 1 will die before the age of two.

Around six babies each year in Ireland will be diagnosed with SMA. Parents of children living with SMA spoke to the TheJournal in the past requesting that the condition be added to heel prick test, in order to identify if a child as SMA as soon as possible.

Clinicians have said that by the time children begin to show symptoms and get a diagnosis, which might happen at around three to four months of age, irreversible damage will have been done to the nerves that develop muscle function and allow children to eat, move and breathe.

SMA Ireland, an advocacy group, welcomed today’s announcement.

Director Jonathan O’Grady said that “this achievement is a testament to the collaborative efforts of the National Screening Advisory Committee, the Health Information and Quality Authority (HIQA), the Health Service Executive (HSE), and the Minister for Health, Stephen Donnelly”.

Including Spinal Muscular Atrophy in the heel prick test marks a key advancement in early diagnosis and timely treatment, offering a beacon of hope to families grappling with this devastating condition.

With reporting from Michelle Hennessy