Trigger warning: this article deals with the subject of miscarriage and infant loss which some readers may find distressing.
October 15 marks Pregnancy and Infant Loss Remembrance Day — an annual day of remembrance to acknowledge those who have experienced the unfathomable pain of miscarriage, stillbirth, SIDS, ectopic pregnancy or the death of a newborn.
Heartbreakingly, 1 in 4 pregnancies end in loss before 12 weeks, making this awful occurrence both incredibly common, and yet desperately misunderstood or completely overlooked.
Driven by her experience of loss, and the isolation that came with it, Samatha Payne was inspired to start the not-for-profit organisation Pink Elephants, with the aim of providing the latest resources, information and peer support for anyone impacted by early pregnancy loss.
The Latch chatted with Samantha about the prevalence of infant loss, how to support someone who has been through it and what needs to change in terms of how we talk about and write policy around miscarriage.
“We’re seeing a change in the narrative around infant loss now, with celebrities sharing their stories and women being more open on social media so it is more positive,” Payne said.
“The issue is that governments have not caught up quick enough. So, we don’t think there is enough support from the Department of Health with this issue at all. We know that miscarriage is common — it is the most common complication of pregnancy, yet there is a very real lack of support for women. We surveyed 1550 women and 74% told us they feel unsupported through miscarriage. It’s not good enough”
Speaking about Pink Elephants’ continued mission to drive change and awareness to the topic of miscarriage and loss, Payne emphatically says, “When you’re in that fight or flight mode (after a loss) you should not have to advocate for yourself.
“So we advocate for women who are having to negotiate with work for leave, they’re having to return to work with a brave face on when they’re not quite ready and when they’re really struggling without their workplace truly understanding what they are going through. They’re failed by the healthcare system because they’re given no referral for support or their experience is minimised and they are told to just get over it, and then their family and friends don’t know how to support them.”
The Latch: So, to that end, what advice do you have to people to best support a friend or family member who has been through pregnancy or infant loss?
Samantha Payne: Treat it like any other bereavement. So, if any other member of that family had died, you would acknowledge the loss. You would potentially turn up with meals, you would offer to come and look after the older children or to help with the housework.
All of the things you would do for any of the types of loss really should be done in exactly the same way for miscarriage. Because to the couples who are going through that, it’s the death of their baby.
And then the best thing is to make sure that you don’t expect them to be better a week later. Because there is no timeline on grief and the majority of our community, it impacts them profoundly for a long period.
TL: What about couples themselves who have experienced the loss, how can they best care for themselves and honour the grieving process?
SP: So firstly, acknowledge that this is a profound loss and that it’s okay to grieve. It’s really important to provide that validation and to seek support. Know that it’s okay to reach out to communities such as Pink Elephants, join our online communities, connect with other women/couples who are also going through a similar time.
And then also access specialised materials. We also have a suite of resources on our website, which pertain to different stages in a pregnancy loss journey, because we know each of those stages brings its own unique challenges, so we’ve designed them that way. They’re accessible and free to download at any point. They just provide that reassurance that somebody understands what you’re going through. So that’s peer support.
Also know that if you are really struggling, you can access mental health support and there’s no shame in that. It’s okay to go to your GP and ask for a mental health care plan. And speak to a clinician or a counsellor and get some help processing your grief. It’s perfectly okay and normal to do.
TL: How do we also support the men who experience these losses with their partner, albeit in a different way?
SP: Firstly, it’s really important that we acknowledge that the partner has also lost the baby and therefore, they are entitled to grieve because often what we find is partners are put into support roles. And they might naturally fit that role. However, they’re not acknowledging or processing their own grief and that can come out later, again, in poor mental health.
Secondly, again, check in on them, as well. Ask them how they are doing.
And from a couples perspective: understanding is key because most couples don’t get this but we grieve so differently. And that’s okay. You might have an outward griever, someone who is quite intuitive and emotive and they cry a lot, so it’s really obvious that they are grieving. And then you might have someone who grieves by doing things and tries to fix things, but it doesn’t outwardly look like they are grieving.
You find that within couples it’s really common to have one of each or a blend of both. And that makes it really hard because the woman might feel like her partner’s not grieving, but they are, just in a different way.
TL: What are some changes that you would like to see made in this area across government and in healthcare?
SP: We want to see more cross-sector collaboration addressing the issue head-on. We want to see action because for too long now the experience of miscarriage has been based on a lack of research, false narratives, taboo, cultural stigmas and silence. And what that leads to is women being failed at several points in the health care system, which all responsibility sits with the Federal Department of Health.
At this stage, there is no specific funding for the issue of miscarriage. The research that’s being done is excellent. That’s finally happening now, but we need more of that.
We are failing women at so many points in the system. We did a survey with the University of Melbourne and 88% of women that we surveyed said they wanted a referral for peer support from their healthcare practitioner at the time of a miscarriage. And they’re not getting it.
TL: How does Australia compare to other countries in terms of how we handle miscarriage?
SP: It isn’t that Australia is so far behind any other countries but leaders would be the UK in best practice. They have things like rainbow baby clinics, for example, Tommys, which is for women who fall pregnant after a miscarriage. Obviously, she’s got heightened anxiety, she’s terrified that she will lose the baby. She requires some extra TLC, which has been shown to have better outcomes in her mental health.
They have a clinic where women can drop in at any point and have extra reassurance scans, they could meet with a GP and check things are okay. We don’t have anything like that here. They also have a better referral system so that when a woman leaves, a miscarriage is pointed toward organisations such as Tommys, to get help.
So, we are behind in terms of that here in Australia, but we’ve tried — we’ve spoken with government on several occasions, and we want to work with them, but we are consistently told there’s no funding available.
TL: Do you still have hope though things can and will change?
SP: I do feel like the narrative is changing and I have hope that through things like raising awareness in this way, through increased research, which demonstrates a strong link to mental health outcomes, we will see a change there, but it can’t come quick enough.
I am hopeful. But I’m also really, really sad for the nearly 300 women a day who I know will be failed at so many points. The change needs to happen now, it can’t wait.
If you or someone you know needs support through pregnancy or infant loss, please head to the Pink Elephants official website for resources and information.