Friday, April 19, 2024

What To Expect From A Miscarriage: A Capsule Reader’s Story & The NZ Charity Aiming To Get Information to Those Who Need It

One in four pregnancies will end in miscarriage, but the information on what to expect from a miscarriage can often be hard to find. We talk to a Capsule reader who was sent home with no information on what she was about to experience, and then talk to one of the founders of an NZ charity who is seeking to put an end to this silence around the logistics of experiencing a miscarriage.

Welcome to our series, The Motherhood Diaries – a safe space for you to share your experiences, advice, hopes and heartbreaks. We’ll be hearing from industry experts giving practical advice alongside Capsule readers (You!) sharing your firsthand experiences. We’re looking at everything from fertilitytrying to conceivepregnancythe fourth trimester, newborns, toddlers, children’s mental health and teenagers, fertility issues and everything in between! 

TW: This story contains descriptions of a miscarriage

‘I Felt Completely Alone’: A Capsule Reader’s Story On Her Miscarriage & The Lack Of Information She Was Given

“For my husband and I, our IVF journey is just six months short.

Anyone who has embarked on the IVF rollercoaster will know that, no matter how long it lasts, the feelings of anxiety, hope, excitement and disappointment that come along for the ride. But in some cases, devastation also jumps on board. And that was our experience.

We were 11 weeks along when I noticed some bleeding. I’d had a little at six weeks as well, but then a scan had confirmed that all was well, there was still a little embryo battling to last the journey. But this time, the scan couldn’t find a heartbeat. Our baby was no longer viable.

When we first received the news, I just lay there in shock, with my husband by my side. And then the tears started to flow. We were told to take our time to process everything, and then we were free to leave when we were ready. That was it – we walked away with no advice on what was to come next, not even a pamphlet outlining what to expect or how to cope.

I can remember standing in the carpark with my husband and sobbing about not knowing what to do next. We felt completely alone – I had no idea how a miscarriage actually worked, whether I had already passed what needed to leave my system or, if not, how long it would potentially take, or what would happen.

On the way home, my midwife called. Sobbing, I told her I was okay – clearly I wasn’t – and that I wanted to be pregnant again as soon as I could be. She suggested a D&C [Dilation and curettage surgery] to remove what was left behind, so that I could fast-track the process and get back onto the IVF waiting list.

She also urged me to call an ambulance if the process took over naturally and I felt like I couldn’t cope, but I still had no idea what to expect. What was the process that was supposed to starting?

By the following day, my body had kicked into overdrive – leaving me doubled over in excruciating pain, unable to move. I was bleeding heavily, with large clots exiting my system. The slightest movement opened the floodgates that no sanitary pad had the ability to cope with. My husband rushed me to hospital, where I was monitored for 24 hours.

Over that 24 hours spent lying in hospital, I had a lot of time to think about miscarriages. According to the New Zealand College of Midwives, miscarriage affects one in four women, with The Ministry of Health estimating 7,500 to 14, 750 miscarriages occur in New Zealand each year. That large discrepancy would suggest, as noted on the SANDS website, that there are no official statistics kept for pregnancy loss prior to 20 weeks.

I wonder how something so common could just be brushed under the carpet; how there are so few resources, how we can’t even pass a pamphlet out to women who are sent home to suffer through a miscarriage alone, a process that can be lonely and confusing, or in some cases terrifying and debilitating.

Something as simple as that pamphlet, or a Ministry of Health recommended website, would have been enough to prepare me for what was to come.

I just pray to God it’s an experience I won’t have to repeat.”

The NZ Charity Launching A Pamphlet Detailing What To Expect From A Miscarriage

“It’s so upsetting to think this is still happening every day, and that there is still so much to be done,” says Aleisha Black, one of the co-founders of Miscarriage Matters. Five years ago, the charity was formed after the experience of Corrine, Aleisha’s sister and the other co-founder.

Corrine was experiencing some light bleeding before her 12 week scan, and was told at the scan that the pregnancy was no longer viable and had probably ended around week four. When she was told to go home and await a miscarriage, she was given no information on what was coming. “Nobody even thought to check that she had Panadol at home, that she might need painkillers on hand,” says Aleisha.

‘Just like giving birth, having a miscarriage is different for everybody’

When Aleisha found out about this lack of information, she went digging around as to what was supposed to have happened, what information Corrine should have been given. But instead, she found out there was no protocol back then on what to tell people about what to expect from a miscarriage. “That led us onto the journey to do something about it.”

Miscarriage is one of those floating ‘women’s health’ terms that hangs around in the background until it either happens to you or someone you know. If you’ve ever been pregnant on purpose, the confronting statistic of ‘one in four pregnancies ends in a miscarriage’ sits in your brain rent-free. But for such a looming term, it’s not easy to find actual, solid information on what a miscarriage is like to experience.

After Capsule heard from the reader whose story you’ve just read, we went looking for resources ourselves. Most of what was on offer was either centred on ‘the grief of miscarriage’ or ‘how to try again after miscarriage.’

Anything covering the actual event itself felt like a very vague, almost euphemistic ‘and then nature takes its course’ fade to black. And that isn’t helpful when you’re in the thick of it, trying to find what to expect from a miscarriage.

This is why Miscarriage Matters is so deep on details, due to Corrine’s experience and the experience of so many other people. And now they’ve created an information pamphlet, which will soon be available from their website, and is hitting the printers today to start rolling out to different health providers in the near future. The pamphlet’s goal is to take the personal experience of a miscarriage, plus the expertise of two medical professionals, and turn it into a helpful guide.

“Just like giving birth, having a miscarriage is different for everybody,” says Aleisha. “When my sister had her miscarriage, I went to my midwife and asked if she had any information, and she photocopied me a pamphlet and I was like… ‘I’m not giving her this!?’ It was all about the grief side of it, there was nothing practical when you’re in the moment and actually experiencing it. You’re not ready to think about grief yet, you’re still thinking about ‘why is this happening and what is happening?’”

Aleisha says around half of the pamphlet’s information is on the emotional side, and half of it is on the physical logistics – the impact on your body, what you need to have on hand, what to expect from the actual miscarriage, e.g. the clots and fetal remains.

A common refrain from people who have experienced miscarriage is that a lot of the time, they unexpectedly pass the fetal remains in the toilet, then panic and flush it down. Sometimes this can lead to regret that there wasn’t a chance to keep the physical miscarriage longer, to help them process what had happened.

One woman that Aleisha spoke to as part of Miscarriage Matters told her that “she wanted miscarriage with dignity.” When this woman had experienced her miscarriage, the people in the hospital kept referring to her miscarriage as being ‘like a period,’ and she felt silly for wanting to collect the fetal tissue and then keep it. So when they asked her what she wanted to do with the tissue, she told them to get rid of it. “She had deep regrets about that,” Aleisha says. “The framing of them describing it as ‘just a period’ really influenced her.”

That’s why it’s mentioned on the Miscarriage Matters website that if you don’t want to flush it – and it’s absolutely fine if you do, by the way! – then there are ways to have more of a process around it, to create a ritual or ceremony to help mark the pregnancy. The overall kaupapa of Miscarriage Matters is to help support people before, during and after a miscarriage, so that the lack of available information can stop feeling quite so confusing for those in the thick of it.

“It does kind of break my heart to think that the reason we started five years ago still exists; that every day, multiple women in New Zealand are going through this,” Aleisha says. The Miscarriage Matters pamphlet is a way to get the information into the hands of those who need it, so they’re not left searching Google or being surprised by what can be a very hard time to get through.

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