Something that I have become increasingly passionate about, is the need to recognise that baby loss is not a single story. It is such a overreaching umbrella term and as such, does a huge disservice to the complexities of human experience and individual response.
With loss, grief and trauma being somewhat ‘taboo’ (I challenge us constantly calling it as such, as I feel it becomes a self-fulfilling prophecy), the stories that end up in the mainstream tend to be those that are just that, mainstream. Perhaps presented in a certain way, or spoken by a certain voice, or that contain an element of dimensions that – relatively – appear more palatable to the mainstream audience. As with most things in modern society; it tends to end up being disproportionately white middle class to the reality of incidence. These stories, are of course, still very relevant – yet, when we look at incidence, they aren’t wholey representative.
If we take Stillbirth as an example, we know that there are consistently higher rates amongst lower-socio economic populations. Alongside this, the ethnicity of the baby is the one characteristic which hasn’t been following the downward trend in Stillbirth statistics in recent years; there has been a continued increase for Black, Black British ethnic groups babies to be stillborn and the ratios should shock anyone.
“The increased risk of both stillbirth and neonatal death for babies of Black or Black British ethnicity (compared to babies of White ethnicity) remains fairly constant at 121% increased risk for stillbirth and 50% increased risk for neonatal death” MBRRACE-UK, 2018
When we look at maternal mortality, we see a similar (and heartbreaking) picture.
“Maternal deaths are not evenly spread across our population. This report highlights striking inequalities. Black women are five times and Asian women two times more likely to die as a result of complications in their pregnancy than white women. Understanding these disparities needs urgent research and action.” MBRRACE-UK, 2018
This is never going to be okay. Yet, I’d argue that from the outside of those invested in these topics (and too, maybe from the inside) that general society awareness of this inbalance isn’t present – and simply not helped by the variety of stories out there.
It isn’t just about diversity of people either. Baby loss, as I said earlier, is a huge umbrella term. It encompasses a wide range of pregnancy outcomes and infant death and we shouldn’t ignore the parallels into child loss that so often get ‘pigeon holed’ out due to language. Within this, no two experiences will be the same. One persons 6 week miscarriage will not replicate another’s, nor does a four day old baby dying mean the same thing in two different families. Each story, each experience, each family and each baby is different – and therefore, each deserve to be told, and then, heard.
Before I explore how we are dedicating October to this topic, I want to express that the need for diversity should never silence those who fit within the regularly heard. I am very much aware that ‘equality and diversity’ gets banded around a lot, whether you’re in the workplace discussing employee profiling or sitting on your sofa and talking about the latest PR mishap by your favourite brand – it’s a go-to buzzword and easy critique for a lot of activities. The need to elevate others does not mean elevating over and above those who are already heard – or perceived to be heard. It means elevating to the same level. Everyone’s story is needed.
But why? Baby loss is getting more spoken about. It is featured in soap storylines, and high profile celebrities are sharing their personal experiences, and politicians are (probably not this year, thanks Boris) debating it in the highest platform. It is because of the diversity of baby loss that we need that diversity in voices speaking about it. When you are bereft and broken, and feel incredibly alone and isolated you want to see a resemblance of yourself in someone’s else’s story. You want to know that you aren’t the only person like you living this life. It gives you evidence that survival is possible. It gives you a map book for navigating through grief. It gives you hope and community and an ease of conversation.
It also allows those around the bereaved to feel better equipped. There isn’t a textbook out there that will educate friends and family in how best to support that one person, in exactly the way that they need. People and experiences are different and combined, perspectives and understanding of loss varies. For example, I am not a religious person, and will rarely feel comforted by someone referring to Leo as an angel baby or me, an angel mother. But for others, that’s exactly how they see their children and exactly the language that they identify with. By exploring a range of perspectives, we can better equip ourselves with the flexibility needed to listen and adapt the support relevant to that person. It’s about building a foundation to understand – not a rule book.
I also wanted to touch upon perception. We often hear from people that they ‘don’t know where they fit in’ – its a regularly felt aspect of the isolation that baby loss creates. What we see and hear will also vary, depending on what we tap into, our algorithms, how we search online, what support avenues we take. When I started to receive requests to take part in this series, some of the aspects that people were sharing, I thought were already well covered. But this isn’t about my perception. It doesn’t matter if I think a subject is well covered or not. It matters to the person needing to see that story out there – because they are clearly not hearing it enough to feel less alone.
Most importantly, we need to be understanding the true reality of baby loss – statistically and emotionally. The impact felt and the level of incidence should shock anyone, and with that shock – we need to see action within health services and society as a whole to firstly understand the issues, and then tackle them. In some respects, progress is felt but not for everyone. When there is, we should all reap the rewards of falling statistics and better care. Yet, this is not the case. And that can not be okay.
I read and read and read when Leo died. Some resonated, some different. I never discovered another gay couple writing about loss to the depth and breadth that I needed. This is why I share and ultimately why I need more diversity out there – but I know I do not and cannot speak for all gay bereaved parents. Who can ever speak for all of us, after all?
It is because of this, that last year I started the LGBT Baby Loss blog series and now, the LGBT bereaved parents Facebook group. Those things have ultimately changed how isolated we feel. When we initially lost Leo, I only discovered a few fellow gay and bereaved parents, and until recently, I hadn’t met any in person. Whilst I could relate to many of my now straight friends experiences of loss – there was, and always will be, a slight disconnect. Especially for my wife. In straight couples, I as birth parent, have a counterpart. My wife, whilst she can relate on part for the typical dad position in loss – she is a woman, and a mother, and that gives a whole different set of perspectives. Alongside this, there is the differences presented by the layers of sperm donation, IVF, finances of onward conception and so forth. And gay people aren’t all the same – two sets of gay bereaved parents even won’t always relate or get on (contrary to what the world thinks about gay people!). That’s why we need more stories out there. To find someone, eventually, that makes you say: you understand me.
The need for diversity of course, does not just sit with sexuality or ethnicity or geography. It sits with so many things, about us as people but also about the type of loss and the impact of that loss.
Throughout October, I aim to start conversations around different topics, different experiences from different voices. I also aim to do this is different ways – across blog posts, Instagram posts, live chats, twitter chats, takeovers, and other such things. Because we don’t just need different stories out there – we need different ways to engage with them.
I am under no illusion that the collection of voices we have is enough – it simply can’t be. Nor is it simply a tick box exercise. I invited people to share if they related to the aims of the project. I hope it helps a few people find stories that make them feel more included than excluded.
How can you get involved?
- Follow the hashtag #DiversityInLoss across Instagram, Facebook and Twitter
- Explore stories on the #DiversityInLoss category
- Join in on the conversation by commenting, sharing and engaging with posts to help them be seen by more people – and ultimately, support that person who has bravely spoken about their experiences
- Talk about loss and grief and use the hashtag #DiversityInLoss and I’ll do my best to share; is there a part of your story that you haven’t heard elsewhere?
If you haven’t been personally affected, I urge you to dive in and get involved also – because that is how we learn about the breadth and depth of human experience. Not by reading one story of tragedy or heartache, but by continuing to read more.