Part of Baby Loss Awareness is trying to help people understand that for a bereaved parent baby loss is something that they will carry forever.
It has no time limit, no expiration date. It will change how they look at things.
It will temper the joy they feel with an undercurrent of sadness as they see the children around them (or even their own) reach the milestones their lost babies never will.
I have been writing about the many different facets of baby loss for over 4 years, gradually shifting from telling my own story of my twin sons’ stillbirth as a way to encourage others to share their own stories to a wider approach on prevention and better bereavement care particularly in the workplace.
No-one would do all of these things if they had a choice. None of us wanted to be called brave, courageous baby loss warriors waving awareness banners tearing ourselves into small bloody strips. We wanted our babies to have lived.
“It is a difficult thing to talk about but I hope articles such as yours will make it easier for those who have lost babies to know they are not alone – and for those that know someone who has lost a baby to understand a little bit of what those parents might be going through”
Telling the stories of our lost children and experiences is crucial to awareness raising but I’m aiming for the point where I’m no longer called brave for talking about my sons.
I want it to be as acceptable as talking about my live children. My stillborn sons’ lives were short but they did live.
In telling my own story and hearing the many, many stories of bereaved parents it still surprises me how many different aspects there are to it. In learning about the experiences of other bereaved parents we start to get a picture of the wider system and how it fits (or doesn’t fit) together.
It was through telling the story of my own loss and the long-term impact of the grief of baby loss at work that I began to develop a workplace baby loss support network with my colleague to help offer practical and emotional support to anyone at work affected by baby loss.
“I’ve found your work and support on miscarriage and pregnancy loss over the past year to be invaluable, and know that it has been done at a time when you have been under considerable and understandable emotional pressure and stress. Sometimes I am quite overwhelmed by the commitment and time that you have shown to the work… you have been instrumental in keeping the work current and active. You clearly have a great network which you aren’t afraid to exploit for the benefit of the project and have thought creatively about how best to progress what we are trying to achieve together.”
My survey accompanying my workplace blog helped show that there is an increasing number of people without direct experience of baby loss that want to know more. Reaching these people is critical if we are to improve bereavement support in the workplace and beyond.
“Thank you very much for having the strength and courage to write this blog. I would like to thank you for directing people to where they can find support and just someone to talk to”
“I think it’s a brilliant thing to have shown and publicised within the department – I feel actually really proud to work somewhere which has acknowledged Baby Loss Awareness Week in multiple ways.”
There is only so much I can do alone and I work with other awareness advocates to share support and knowledge. I worked with Rachel Whalen to create a simple image based on her video to demonstrate how little it takes to start a conversation with a bereaved parent about baby loss. This has been reached over 11,000 people. The accompanying blog was written to emphasise this and to be general enough for other people to use with their friends and colleagues to open up conversations.
I’m a regular participant in the Legacy of Leo’s #BabyLossHour discussions and produce summaries of the conversations so people can catch up on conversations they missed or get an idea of the experiences of others before they are ready to join in.
As a bereavement befriender for the Twins and Multiple Births Association (Tamba) I offer support to bereaved fathers and signpost Tamba’s bereavement services when encountering other bereaved parents of twins.I have worked to draw the links of the issues affecting those that have suffered baby loss with the wider work of wellbeing and mental health networks. This has helped reached a wider potential audience of people needing or looking to help and break down some of the stigma around baby loss by highlighting the common issues and factors. Considering the impact of awareness raising on my mental health has also led me to reframe the story to emphasise my sons’ short lives rather than their deaths reminding people that they were human rather than an abstract medical term.
I have asked questions that challenged my own understanding and perception around raising awareness. How we handle the feelings of those who have suffered loss and don’t want to talk about it and how to handle workplace tensions between those that have lost babies and their pregnant colleagues.
I have used the combination of my experiences and professional skills to submit recommendations on maternity and bereavement care through submissions to the Maternity Review [Photo], the Health Select Committee and recent Department of Health (and Social Care) / Saying Goodbye review with contributions on stillbirth, miscarriage and pregnancy after loss.
What Others Have Said
The blog itself is filled with a balance of fantastic, passionate articles raising awareness of the movement to end preventable stillbirth as well as reflective, emotional pieces about his own experience which offer a great insight into a father’s perspective on grief