Hospitals to pilot digital system to record children's deaths

Professor Michael Barrett (left), Chair of the National Paediatric Mortality Register Governance Committee with Rebecca Maher at the NOCA Annual Conference 2025. Picture: Conor McCabe Photography

University Hospital Limerick and Children’s Health Ireland will pilot a digital system for recording children’s deaths within weeks, a conference in Dublin has heard.

The national office of clinical audit (NOCA) conference also heard from a bereaved mother who lost her baby to a rare heart condition as she welcomed research into why children die.

The National Paediatric Mortality Register (NPMR) annual report was launched at the conference and discussed by Professor Michael Barrett.

“We need more granular detail that is specific to the condition to which the child succumbed, and that is currently unavailable which makes it really difficult to make evidence-based recommendations for reducing the number of premature deaths,” he said.

He called for mandatory and timely reporting to a digital system. Death data in the report is drawn partially from the Central Statistics Office and also from a child death notification form developed by NPMR.

“This is fully implemented in CHI at Temple St, in which child deaths are now notified immediately to the NPMR on occurrence,” he said.

“This leads onto an electronic version which will be piloted across CHI and University Hospital Limerick in the coming weeks with the hope of nationalisation in the following year.” 

This tool will make recording deaths faster. It could allow doctors to see trends including across infectious diseases, car accidents or self-harm as well as conditions affecting babies.

Prof. Barrett, NPMR governance committee chair and consultant in paediatric emergency medicine, said the report made recommendations around updating data systems. He called for NOCA to “urgently progress” this e-data collection system.

They should interact with the HSE on its plans to roll out individual health identifier numbers to all patients, he advised, in one of the recommendations in the report.

Rebecca Maher, shares the story of her daughter Matilda who passed at eight months old from a heart condition at the NOCA Annual Conference today. Picture: Conor McCabe Photography

Rebecca Maher spoke about the impact of losing a child to highlight suffering behind the statistics in report. Mathilda Quinn lived from April 13, 2015, to December 7 that year. She had several major operations including open-heart surgery at just three days old.

“We were told these surgeries had been developed maybe 20 or 30 years before Mathilda was born and without those she would have just passed away within the first few days of her life,” she said.

“So I think the constant research and development of new medication is just so important to make sure every family has a better chance. 

I think that the next child diagnosed with hypoplastic left heart syndrome has potentially a better chance because of everything that was learned from Mathilda and her death. 

She shared pictures of the little girl being treated “so well” in CHI at Crumlin hospital and being taken for walks around Dublin.

“I think the work that has been done here today in terms of research into causes of children’s death is just so vitally important,” she said.

The now mother of three received a standing ovation from the audience of healthcare workers.