“The death of a child is something that nobody wants to ever plan for, something nobody wants to think about, let alone speak about. It’s isolating and scary, you think: am I the only person going through this?” – Lorna Cobbett.
Lorna is Mum to triplet daughter Essie who died in August 2017 at 18 months old. Alongside other bereaved parents she has helped us to produce a new end of life guide for families to help parents navigate the uncertain and heartbreaking world of childhood death. The guide Caring for a Child at End of Life launched on 25 November and has been generously funded by Children with Cancer UK.
“I feel passionate that we should talk more openly about baby and childhood loss, I hope that the release of this new guide will empower families to talk openly about their experiences to help other families facing the unimaginable,”
Lorna Cobbett, Mummy to Essie
Questions answered in the guide range from: ‘How do I talk to my child about death?’ to ‘Do I have choice over where my child dies?’ The guide is aimed at supporting families to plan for their child’s care, helping them to understand what to expect and assisting them in making difficult decisions.
“It’s very important that families think about their wishes and making special memories with their child,” added Lorna. The guide shows families how they can collect special mementoes, including putting together a memory box and making handprints and footprints: “Fill up your phone with photos and videos. Take them all the time. Keep the videos for you. You will never know how precious they until your child has gone.”
The guide is aimed at parents and carers but may be helpful for other family members or anybody who knows a family with a child who has a life-limiting or life-threatening illness.
More families than ever need support
“We are launching our new End of Life Guide in the context of a growing number of children with increasingly complex needs sadly requiring end of life care. We are so grateful to the group of bereaved parents who contributed to our guide, providing their experiences to help other families facing the unbearable. We want families to feel empowered by the information in the guide so that they are equipped to make plans and think about theirs and their child’s wishes. We also hope that the guide will help facilitate conversations of childhood death and bereavement to help families feel less isolated and alone.” said Lizzie Chambers, Director of Programmes at Together for Short Lives and author of the guide.
Richard Strawson’s son Daniel died on New Year’s Eve 2007 at eleven months old: “When dealing with the emotional turmoil at the end of your child’s life, we found it a real reassurance that we had already carefully considered and communicated our end of life wishes to those caring for our son.”
We hope that the release of this new guide will help families, just like Richard’s, consider their end of life wishes early so that they can spend more precious time with their child at the end of their life and less time thinking about difficult decisions.
Alongside Caring for a Child at End of Life we have also produced a professional End of Life Guide for all medics caring for a child approaching the end of their life. This resource is is available to download and order here.
You are not alone
The guide Caring for your Child at End of Life is available to download and order here. We encourage families to work through it at their own pace and to seek support from their care team to talk through any issues it raises.
Mum Lorna added: “Sadly you are on a journey that many families have been on before. It’s horrific. It may not feel like it now, but you will be okay. In time you will cherish the precious mementoes of your child. I hope this guide helps you when you need it the most.”
