National Paediatric Mortality Register

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.