When I was pregnant after having a miscarriage, there were a lot of things I didn’t do. I abstained from sex for the first 12 weeks. I stopped going to my beloved yoga. I didn’t lift anything heavier than my handbag. I refused even one coffee.
Not one of these things that I so fastidiously avoided cause miscarriage. But subliminal messaging all around us tells us that miscarriage must be something we did, right? Even the word miscarriage implies an error: did the birth parent carry the baby incorrectly? Eat sushi? Have a bath that was too hot?
I didn’t just avoid things though, I did lots of “positive” stuff too. I talked to the baby. I whispered words of encouragement, thinking they could hear me. Remember all the pregnant women in Hollywood movies with headphones on their bump relaying Beethoven to their babies in utero? I told my baby they were wanted and loved. Every time I saw a double rainbow in the sky, I felt deeply it was a sign from the universe that this baby was my sticky baby – the one that would stick and be born alive. I wore a healing crystal, you know, just in case.
The information vacuum around miscarriage, combined with the desperation of the grief-stricken, is the perfect breeding ground for misinformation and fertile soil for superstition.
And that is why the development and launch of a new website, the first of its kind in Australia dedicated solely to evidence-based, medically-proven information and research, will be an absolute asset for patients in this space. It has been far too long in coming.
When I started researching the cultural, medical and societal taboos around miscarriage and how they translate into some of the shocking care seen across Australia, and indeed the world, I reached out to Prof Meredith Temple-Smith, part of the University of Melbourne’s Department of General Practice. It was 2020 when I spoke to her, but three years prior she had visited the world-leading Tommy’s Centre for Miscarriage Research with the help of a small grant. The aim was to set up an Australian version of the Tommy’s website, which features information provision, research updates, support and referrals. But when I called, asking where I could find the Australian version of the site, Temple-Smith explained they hadn’t set it up because they couldn’t secure any further funding. Every five minutes in this country at least one person experiences miscarriage and yet no one was willing to fund a website to help and support those people. It affects more than 100,000 families a year.
After I spoke with Temple-Smith, her colleague at Monash University and frequent research collaborator Dr Jade Bilardi won an Australian Research Council Discovery Early Career Researcher award. It was only because of this that the two were able to get the project up and running.
“Through research studies we’ve done over the last five years or so … we’ve basically found that a lot of the time healthcare support and social supports are lacking at the time they have miscarriages,” says Bilardi, who herself experienced early pregnancy loss.
“What that means is that people often end up searching online or going online searching for support, searching for information. In particular, male partners tend to go online a lot, because they typically receive even less support and acknowledgment from their network.”
The team behind the Miscarriage Australia website comprises academics and clinicians. The site includes information for women, men, LGBTIQ+, friends or family of those affected. You’ll find details on what comprises a miscarriage, why someone miscarries, types of miscarriage and so on. There are referrals to support services. And crucially, there is information and support for medical practitioners working in this space or any other who are likely to come into contact with pregnancy loss patients.
The information is fact-checked and the site is managed by the Miscarriage Australia research team, co-led by Bilardi and Temple-Smith, and an expert advisory committee.
So why do this? Why can’t Australian patients just use the Tommy’s website?
There are crucial differences between the Australian and UK systems. It’s also very important that Australian patients are able to be referred to local support services, such as phone support or in-person clinics.
In the age of misinformation, there is already a plethora of junk floating around online masquerading as qualified medical advice. When you also wrap an issue in silence the way we have with miscarriage, there’s a dual element of shame and taboo, meaning there is often no opportunity to step in and clarify when a patient is drifting away from medically-proven fact.
There’s also challenges around the dissemination of up-to-date research findings. Admittedly, there has been little research on miscarriage and early pregnancy loss, but there have been some crucial developments around, for instance, antiphospholipid syndrome (a clotting disorder that can cause miscarriage) or the use of progesterone in recurrent miscarriage patients. For some patients this can mean the difference between more miscarriages and a living child. To know that there is one place where you can access the latest research and guidance is a crucial gamechanger.
There are also hundreds of miscarriage support groups on Facebook. But often, they’re run by volunteers and not able to police all the posts and responses. Some of these groups are rife with outdated advice. The support groups are crucial to help patients feel less isolated, but for information provision, they leave a lot to be desired.
One of the key things I hope this website can do is track how much traffic they get and therefore give us some indication as to how many people are actively seeking information. Based on the number of referrals to other groups that I’ve seen in my travels, I expect the number to be very high. And if that’s the case, it should be further evidence needed (if we even require more) to propel this issue out of the shadows and into the sunlight, where it belongs.
• Isabelle Oderberg has been a journalist for more than two decades. Her book on miscarriage, health equality and how to improve care for those who experience it, Hard to Bear, will be released in April by Ultimo
