National Paediatric Mortality Register
The National Paediatric Mortality Register (NPMR) collects and analyses data relating to infant and paediatric (<16yrs) mortality in Ireland. The ultimate aim of the NPMR is to provide a national registry of all paediatric deaths, which will allow us to generate high-quality data and an evidence base to inform policy. A policy aimed at reducing the number of child deaths into the future.
This is the first report published from the National Paediatric Mortality Register (NPMR) since it came under the governance of NOCA in 2020.The NPMR aims to collect, analyse and report on data relating to all deaths in children aged under 19 years in the Republic of Ireland.
After Kieran died, I was involved in setting up a peer support group for bereaved parents called Anam Cara. Sharing in the journeys of other bereaved parents has only confirmed to me how much the details matter, that our children are not just statistics – how important it is that if you ask us a question, you listen to the answer; e.g. how their name is spelt on their death certificate; the details of both our child’s life and death are important. When dealing with the bureaucracy that follows the death of our child, we should be met with kindness, empathy and compassion. As bereaved parents, we want our children to be remembered and their names spoken. If the details of their story (whether it is an illness, accident, suicide or some other trauma) can prevent another family from walking in our shoes, then it is like a balm for our soul. We would do anything to have our children back, but we would also do anything to prevent another family from joining our ranks.
When I was asked to be a Patient and Public Interest Representative for the NPMR, I wasn’t sure what I could bring to the table. However, if I can make people see that behind the statistics are real lives cut short and brokenhearted families, then that is something positive in itself. If the details of our children’s deaths can be used to improve treatments, services or supports for families, then that is even better.
Kate Burke — PPI Representative, NPMR Governance Committee