“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.
Which is why we’ve been working hard to develop supportive services which care for our bereaved families.
We do this in a number of ways: Specialist neonatal bereavement support groups, providing heartbeat bears as part of end of life care on all four of our neonatal units, providing The Story Of bereavement books and working with our partners Zoe’s Place to provide remembrance services.