'I sat with couples about to meet their babies.' 3 things we need to change about miscarriage care.

A few weeks ago, an ultrasound technician told me in a fairly unceremonious way that there was no baby on his scan. There was a yolk sac, but no heartbeat and no eight-week-old bub.

The appointment had started an hour late, with questions revealing that my file hadn’t been reviewed - hopeful questions like, 'Is it all going well?' and 'How are you feeling?'

I’d spent 10 days waiting for this, feeling nauseous and not knowing if that was my pregnancy or anxiety. My first dating scan had thrown up uncertainty, so I had to wait to see if there was an issue or if my dates were just out - something I’d experienced with my daughter.

Watch: A tribute to the babies we've lost. Post continues after video.

I had begun to reason and rationalise, reading up on all things miscarriage - the statistics, management options, and real-life stories. But when the moment came, I was devastated. A crushing tidal wave of grief washed over me.

This was just the beginning, and it was a small indicator of what was to come. 

As a busy mum working in communications, I have a natural inclination towards organisation and action. So, I quickly set out 'planning' the rest of my miscarriage.

I acknowledge that I’m privileged and lucky to have great support. I talked to my GP immediately, attended my appointment at the Early Pregnancy Assessment Service (EPAS) within 36 hours, and scheduled a D&C - my choice for my body and mental health.

I knew managing this would be difficult, but preparing for what I could was important to me. I knew about the procedure, potential risks, and follow up care. I knew there would be complexity and imperfection in my experience - the nature of the healthcare beast. 

What I didn’t know however, was just how challenging the system is and frustratingly, how small gaps in communication are creating major gaps in care.

Knowledge is power, even when you’re struggling. So here are three things I wish had been communicated to me, alongside issues I believe we need to address when it comes to miscarriage care.

1. You’ll be seated face-to-face with healthy pregnant women and couples undergoing fertility treatment.

Despite knowing that I was going into a hospital where women give birth (where I had myself), I was completely unprepared to have my miscarriage managed in small shared spaces with pregnant women and couples undergoing fertility treatment.

This happens at the EPAS unit, but it was while waiting for a D&C that the cruelty of this truly hit. I pride myself on being resilient and tough, but this floored me. I swallowed tears and sobs sitting face-to-face with couples about to meet their babies (via c-section) as I waited to have mine – or what was – removed. 

No one had warned me – it was assumed knowledge. And it was humiliating. It’s only in talking to others now and unearthing a couple of articles that I’ve found this to be one of the most jarring parts of the experience for women.

Creating separate spaces for miscarriage care is a no-brainer but clearly funding, staffing, and process are all challenges here. In the interim, I believe a verbal and written disclaimer to EPAS patients and those going into hospital for a miscarriage related procedure should be mandated, with a view to minimising trauma and maximising the opportunity for mental preparation. It’s not the solution, but it’s a start.

2. Prepare to wait and to be at the bottom of the list. Steel yourself and really consider bringing support, even if you feel strong.

I waited in limbo between dating scans, and waited at the EPAS unit for hours – first in, last out – due to a paperwork issue. But it was my time waiting for my D&C that broke me. It was the worst day of my life.

I was told to be there at 6.30am. There was no guarantee, but there was a good chance I’d be seen early. That was the advice. I was hopeful but knew there would be some waiting involved.

That day I waited eight hours to be seen by a doctor, and over 12 hours to be discharged. For a simple, 20-minute procedure, I wished with every fibre of my being that I didn’t need. 

I waited alone with my grief and with patients who were not like me. Again, I was the first one in and last to be seen. I sat as nurses walked by, giving non-updates and occasionally asking if I was okay, when clearly I wasn’t and clearly they had no ability to support me. 

At 2pm, another nurse passed by and on seeing my red, swollen face, asked quietly if I needed anything. I had fasted since 10pm the night before; I had barely slept; I had waited for what felt like an eternity. With the only strength I had left, mixed with a desperation I’ve never felt before, I replied, "I need an update. I need to know what’s happening."

My breaking point was the point at which a call was made. I was seen by a doctor and the rest went as anticipated. 

With a D&C, you are put on the 'emergency list', you’re 'booked in', but not really. I feel that unless you have been through this, you cannot understand just how torturous a wait under these circumstances is. I believe women experiencing miscarriage should be treated in a timely way, not left waiting to bleed or suffer in silence.

For women set to undergo a D&C, clarity on best and worst case wait time scenarios, the resources (or lack thereof) available, and role of a support person should be pre-empted and communicated as part of procedure, not put on patients.

On this episode of Get Me Pregnant, Dr. Anne Coffey shares her personal experience with miscarriage and her advice on how to get the support you need during this difficult time. Post continues below.

3. Advocating for yourself is hard, but necessary.

I’ve had a few encounters with the healthcare system where I realised that you need to be your own advocate, and find the strength to speak up - even if you’re not an expert. But advocating in a fast-moving system where everyone seems to have their hands full or tied is hard. Add to this the nature of pregnancy loss and it’s harder still.

While at the EPAS unit, a nurse tasked me with chasing my imaging results as they hadn’t come through. I understood - I could see she was busy. But I had to call the clinic four times and talk to multiple contacts over three hours before I could be seen by a doctor.

Hindsight tells me that if a nurse or doctor had stepped in, it could have expedited the process, and the stress and embarrassment of chasing results to confirm my miscarriage in public could’ve been avoided. 

While waiting for my D&C, I also felt helpless. The passive collective consensus was that I was at the mercy of the system.

Women experiencing miscarriage are vulnerable. Having a patient liaison or psychologist on-call and/or clearly communicating this as available – not just once, but every step of the way – is important. Ensuring there are check-ins when certain wait times are exceeded should also be on the agenda to ensure women are seen, supported, and kept psychologically safe. 

One positive thing to come out of this was connecting with a nurse who encouraged me to write to the hospital, saying it was the only way we could make sure this didn’t continue. I’ve now found my voice, submitted my letter, and am hopeful of making a small impact.

In the scheme of things, I’m aware that my experience is not shocking. It’s not 'that bad'. I am 'lucky'. I am also still experiencing flashbacks. So, what needs to happen and what level of shared trauma needs to be experienced, for meaningful action to be taken and for women to get the care they need?

I deserved better. We all do. 

Edwina Brook is Business Director of creative communications agency, History Will Be Kind and Mum to one very cute toddler. Alongside navigating the wild ride of motherhood, she’s passionate about unearthing insights and stories that help spark conversations and fuel change.

If this has raised any issues for you or if you would like to speak with someone, please contact the Sands Australia 24-hour support line on 1300 072 637. 

You can download Never Forgotten: Stories of love, loss and healing after miscarriage, stillbirth, and neonatal death for free here.

Feature Image: Getty.