Welcome to the It Still Takes a Village – Working in Baby Loss Interview Series where we take a closer look at those who dedicate their day to day to preventing baby loss and supporting those affected. You can read more interviews, here.
I’d like to introduce you to Caroline, of The Grief Geek. Caroline is an active tweeter, which is where I first came across her work, and she regularly takes part in Baby Loss Hour. I was delighted to hear more about her work in this interview blog series, and I’m honoured to share it with you all today.
“Every time I receive a message from a bereaved person saying they loved my book and that it has helped them is everything to me.”
1. So, to start us off, please can you let us know a little about your current role?
I am currently at Trinity College, Dublin researching the impact of gestnatal (from conception to 28 days post birth) deaths for a PhD. I’m primarily looking at the impact on the mother (due to the biological nature of the relationship) but also the impact on others within the ecological system.
My 30 year background in volunteering & researching (pre bereavement and bereavement) is here: https://www.carolinelloyd.co.uk/about-me
I have been working on my PhD formally since September, 2016. I don’t have a typical day! Some days I am searching the internet/academic journals/books for something specific, other days I am writing up my findings, I have regular meetings with my PhD supervisor, I produce abstracts and present at conferences, I create and deliver training and I deliver presentations and keynote speeches. I’m also writing articles for newspapers/general publishing on my thesis topic (they haven’t been published yet) and articles for technical journals (they haven’t been published yet). I have created a new bereavement model that I’m currently drafting another book for and have already published one book on bereavement in general.
I work in a designated office most of the time, in the library, from home, coffee shops, airports, trains etc! I work 24 hours a day (even if its just reading), seven days per week. I have to force myself to take time out.
“We have introduced the word “gestnatal” to our research to encompass all embryonic, foetal, and baby deaths from conception to 28 post birth so that we can focus on the impact of the loss and minimise societal hierarchies of grief.”
2. What are you currently working on? Is there a particular project or aim that you’d like to share with people.
I’m currently focussed on researching and ‘adding to the knowledge’ the impact of gestnatal deaths; from that the most important thing is dissemination of that information; training and educating anyone involved in or supporting those bereaved in that way.
3. What motivated you to do the job that you are doing now?
I have been a volunteer for 30 years in pre bereavement and bereavement (on and off) as a result of my own bereavements. I have been bereaved in many ways but I have also had two gestnatal deaths of my own.
4. In what ways does your current role allow you to get involved in the baby loss cause?
Mine is mainly education and training to those who are working with or supporting those who are bereaved in that way. I am also a trained bereavement counsellor and support group facilitator so it informs my practice when I am supporting those bereaved in that way too. Baby loss is the focus of my PhD thesis but all of what I do is for the bereaved in general.
5. What are the biggest frustrations or constraints that you face in supporting those affected by baby loss or preventing baby loss in the first place?
I don’t have any frustrations personally; my PhD supervisor, my counselling supervisor and my support system (including Trinity College) are all very supportive.
“The internet has opened up a whole new channel of dialogue where babyloss parents can claim their own narrative…”
6. Do you think that Baby Loss is still a taboo, and if so, why? Do you encounter issues with it being a taboo in your day to day work?
I don’t like the word ‘taboo’ because it means ‘forbidden’ and I don’t agree that it is a forbidden or restricted topic. I do however think its a very sensitive topic and as with anything sensitive, some people would rather avoid it. I think that’s because most people don’t a. know what to say and b. because it brings home the reality that this could happen to anyone, and most people don’t want to think that their baby could die. It’s a hard thing to think about, so it will equally be a hard thing to talk about.
I appreciate that doesn’t help those affected by baby loss and can make it worse, but I think we have to find a way to navigate this. (I wish I had easy answers for that but I don’t!). Also we have to remember that some people are naturally private, I don’t want to discuss my baby losses with anyone other than my very close friends and partner, and that’s my choice, its not because I think that it’s ‘taboo’.
7. Who else do you work alongside in terms of baby loss support or prevention? Are there any charities that support you, or perhaps a colleague that you couldn’t manage without?
The Irish Hospice Foundation and Child Bereavement UK are fantastic, as are SANDS. I am also involved with ISA (International Stillbirth Alliance) and attend their conferences, I am friends with a few of the organisers. I couldn’t do any of the PhD research work without the support of my amazing supervisor.
8. When the job is hard, what one thing reminds you to keep on keeping on?
Impact: that everything I do 24/7 is for the bereaved person. Every time I receive a message from a bereaved person saying they loved my book and that it has helped them is everything to me. The research has indirect impact via people who support the bereaved e.g. counsellors, healthcare professionals, funeral directors, charities etc. so that feedback is helpful and valuable too, but getting a message from a bereaved person always makes me humbled.
“Also we have to remember that some people are naturally private, I don’t want to discuss my baby losses with anyone other than my very close friends and partner, and that’s my choice, its not because I think that it’s ‘taboo’.”
9. We are in a shift change with the understanding and awareness of baby loss. What would you say to someone just starting out in a job associated to baby loss?
1. Listen to the bereaved parents; they are the experts in their experience and their feelings and thoughts
2. Everyone is unique
3. Never assume
“We know from research that grief is not related to the gestational age of a developing baby.”
10. It’s likely that a newly bereaved parent is reading this. What would you like to say to them?
“I am truly sorry for your loss”
11. We have some ambitious targets for baby loss currently in the UK. What are your specific hopes for the future in terms of maternity and baby loss?
My blog on the last stillbirth and SIDS conference in Glasgow a few weeks ago pretty much sums that up – https://thegriefgeek.com/2018/06/12/2018-international-conference-on-stillbirth-sids-and-baby-survival/
12. Thank you so much for taking part in this interview series. Lastly, before we finish – Is there anything else about you or your job that you’d like to let people know about?
My personal view is that things are changing; the internet has opened up a whole new channel of dialogue where babyloss parents can claim their own narrative, where educators and academics are sharing knowledge and policy makers (like Will Quince) are listening to bereaved parents. There is a whole host of knowledge and support on social media and I think that is a very good start.
To continue to follow Caroline and The Grief Geek, visit the below
This blog post is part of an ongoing spotlight on those working in baby loss. To read more from It Still Takes a Village series, visit the hub page here.