Finding the right terminology when it comes to the death of your baby, is just one way of trying to find meaning – a reason. And post-neonatal death to me is important part of our daughter’s story.
Many of us thrive off of stats, I have mentioned before how when someone you love dies you try to find somewhere to fit in. Finding a number in the hope that it will make you feel slightly less alone.
But as I began searching for answers, searching for others it very soon became apparent that it wasn’t going to be as easy at it seemed. It felt even harder to find any acknowledgement for our daughter’s life.
Of course, one of the first things I googled was “neonatal death.” It was there I discovered that she wasn’t technically neonatal.
“An infant placed in a neonatal intensive care unit. Neonatal nursing is a subspecialty of nursing care for newborn infants up to 28 days after birth. The term neonatal comes from neo, “new”, and natal, “pertaining to birth or origin”.
She died in neonatal care, but she wasn’t a neonatal death. The more I delved into her age range, it brought types of death – SIDS, birth defect, hereditary conditions.
She was none of the above, she was a premature baby, who lived and died in the neonatal unit. Who was simply waiting to gain weight to be able to go home, so not even a poorly premature baby.
Hit with areas of after care turning us away due to technicalities of age range, or not dying the right way; made me even more determined to find a corner for her.
“Post-neonatal is an infant between 28 and 11 months of age”
While she has an estimated cause of death due to not having a post-mortem, we’d still like for her to be acknowledged in some way.
While it is important for many support areas to stick to their set age groups and reason. It is important to us to ensure that our daughter’s death meant something.
It is important to families to have their babies acknowledged in the right way.
In 2012 898 babies died post-neonatally. Just over two a day (ONS)
Our daughter was one of 67 to die in April of that year.
Between 2012 and 2016 4300 Post-neonatal babies have died. They deserve to be recognised as much as any other types of loss.
This is why I will keep talking, sharing and including “post-neonatal” death.
Not all babies die before 28 days, not all babies die in pregnancy. Not all babies get to go home.
At 28 days our daughter was bonding with her sister, and waiting to gain weight. at 28 days death was not on the cards.
When your baby dies
When your baby dies, there are times where it can be difficult to remember, or moments of questioning whether your child ever existed. Especially when they never got to go home to meet family and friends.
Words and acknowledgements matter.
Post-Neonatal babies exist. Don’t forget them.
Our daughter died from overwhelming sepsis at 35 days, just 7 days out side of neonatal death aftercare.
Our daughter mattered.