Welcome to the latest addition 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.
Since my son died, I have been active on Twitter and followed a lot of the key charities, movements and research in the world of stillbirth and baby loss. It is clear that there is movement happening in Australia right now, with the main charity Still Aware seeking to change attitudes and press forward with progress. When I advertised this interview blog series, I had several researchers and health care professionals in Australia contact me, wanting to get involved and make connections with the activity happening here in the UK. One of those was Danielle, who herself has personal understanding of baby loss, and has gone on to dedicate her studies to the cause.
“Family tried to understand, they supported best they could, but I just felt so silenced. I had previously completed a psychology honours degree and felt that I had finally found my calling. I wanted to go into research and advocacy.”
1. So, to start us off, please can you let us know a little about your current role?
I am currently a PhD scholar and class tutor at the University of South Australia, Adelaide. I am now in my final year of my PhD, so I am currently collecting a bit more data and writing what I have found. My average day is so varied, it is why I love working in academics. I can have days where I spend the day reading research, and another day where I am connecting to pregnancy loss organisations. I also teach 1-2 days a week, so could be in the classroom for a few hours then head back to my office. I feel like sometimes I never sit down and I am walking or driving from place to place! I have been known to do work in my car whilst my child naps as well. So it is a constant but exhilarating juggle.
“I feel that we need to better understand stigma and its role so we can create better interventions in reducing it.”
2. What are you currently working on? Is there a particular project or aim that you’d like to share with people.
I am exploring the experiences of stillbirth stigma and working on a scale to determine the type and measure the impact of it. There is a lot of discussion about how stigma can affect the bereaved parent, and I believe that is true. It is really difficult to talk about your baby in a society that silences and minimises you. I feel that we need to better understand stigma and its role so we can create better interventions in reducing it.
3. What motivated you to do the job that you are doing now?
In 2014, I was pregnant with my first baby. I was 24 years old and told I had no risk factors and that there were no concerns with my pregnancy. I felt her fiercely kick me at 20 weeks, but no sooner had I started feeling movement, they disappeared. Friends and family all assured me it was normal. However, when I presented due to itchiness, not reduced fetal movement (as I didn’t think I had to be concerned about that) we heard those devastating words: ‘I am sorry there is no heartbeat.” I delivered my beautiful little girl – Sofia Josephine on the 22nd of February. She was perfect! I had felt so robbed that no one told me this could occur. Or, even educated me on the importance of movement. Or, even heard me when I said that I felt something was wrong at my 20 week appointment. That I hadn’t felt like I was growing like I should. I was completely dismissed. When I left the hospital I felt I wasn’t able to talk about my little girl. The friends I had thought that by talking about her I needed to seek professional help. Family tried to understand, they supported best they could, but I just felt so silenced. I had previously completed a psychology honours degree and felt that I had finally found my calling. I wanted to go into research and advocacy.
4. In what ways does your current role allow you to get involved in the baby loss cause?
Initially I had started on helping bereaved parents. However, as I keep researching I am becoming more and more passionate about prevention. My work keeps directing me to how health care professionals discuss stillbirth and modifiable health behaviours. I look at how we are educating and empowering pregnant women about fetal movement and stillbirth.
“We need to do something about this silence!”
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 have been lucky that in research bereaved parents are incredibly generous with their time. They jump at the opportunity to tell their story. Bereaved parents are truly strong and resilient. I get frustrated with the people that surround the bereaved parent, for example, the community, government and professionals who decide what is best for a bereaved parents without actually talking to them. One of those assumptions is that bereaved parents shouldn’t talk about it, and just move on. This silence is what hurts us. It hurts our ability to create change and to open up the discussion about stillbirth. It hurts us when we want to say our baby’s name. We need to do something about this silence!
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?
Yes, it is taboo. No one wants to talk about it. Which means we have limited opportunities to win funding to conduct research. When we talk to health care providers, they also struggle to discuss it and feel like if they do they will create unnecessary anxiety- however, there is no real evidence on this. However, it means that when we try and implement change we are met with a few brick walls, which is unfortunate. We just have to keep moving forward though and keep talking!
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?
I tutor in introductory and developmental psychology and I love it. I love seeing the next generation of students come through and I hope they see how exciting research can be. I also have amazing supervisors, Jane Warland has taught me so much. She is incredibly inspiring and passionate. I have been so honoured to work with her. I also volunteer with Still Aware which is Australia’s only stillbirth prevention organisation. I help out at expos handing out fliers and try to be as present as I can. The founder, Claire Foord is also an advisor on my PhD and every time I have a meeting with her I am constantly inspired.
8. When the job is hard, what one thing reminds you to keep on keeping on?
I think of my children. Sofia who led me to this work and how I want her name said. I then think of my other children, Charlie and Zoe. I want my son and daughter to never have to experience a stillbirth. I want Zoe to be informed and empowered during her antenatal care. I look to the future and imagine a system where women are heard. The future motivates me, the past inspires me.
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?
Take breaks. You will need to keep your energy and motivation up in an area that is challenging but incredibly rewarding. You can feel like you have worked all day every day and not accomplished anything, however, then it just all comes to fruition. But, in order to do this you need to not be afraid to say, “I need some time for me.”
“The future motivates me, the past inspires me.”
10. It’s likely that a newly bereaved parent is reading this. What would you like to say to them?
It is ok to grieve and remember your baby. Don’t let anyone else tell you how to grieve.
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?
I want to become unemployed in this area because we have no more stillbirths! I would be incredibly happy knowing that stillbirths never ever occur and that women are informed and educated. I know that is a big dream! But I am at the start of my career, so I can only hope!
Danielle is currently recruiting for research into stillbirth, and is looking for parents in the Australia, New Zealand, the USA and the UK to take part in a survey here.
To continue to follow Danielle, 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.
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