“I don’t think there’s a word to describe the pain you feel when you wish you could hold your child again, or see them one more time, and realising that won’t ever happen after you walk off the NICU.”
Losing a child on the neonatal unit is devastating. Watching your child fight so very hard to stay alive, and watching that fight slip away is heart-breaking. Hearing the words “Your baby is very sick, they’re not going to make it.” or “Do you give us consent to end care?” are a handful of the most life-changing words and decisions any parent will have to make.
Making the decision to stop your child from suffering and turn off the ventilator is a decision no parent should ever have to contemplate. But, it does happen. It happens all too often. In 2016 alone, there were 2,136 neonatal deaths in the UK (Tommy’s), 2,136 parents whose lives have changed irrevocably and walked out of the neonatal unit without their baby.
We believe, that for the parents who leave the NICUs we support, who are in the community or in some cases still on the NICU with a surviving multiple, extra care on top of the incredible care given by doctors and nurses during end of life care, should be given.
We are working with bereaved parents, and specialists in neonatal bereavement to ensure that where we can we will be there, extra support services are provided and that their stories are heard, and legacies created for their babies.
Every baby and family who make up these statistics have a story to tell, a name to be said and a difference to be made, and we are committed to doing this.