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  • Hidden grief of miscarriage

    Author: AAP

Australian women often find themselves feeling isolated as they grieve after losing a baby, with up to one in four pregnancies ending in miscarriage.

Rebecca sits in an emergency department for five hours bleeding and crying, feeling a life and the hopes that accompanied it drip out of her.

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Claire stares at an ultrasound screen in shock, having trouble understanding why the sonographer is telling her there's nothing there.

Sam bursts into tears at shops when she sees a mother and baby, hating the other woman for having what she worries she'll never have.

Fiona sits wrapped in a hospital blanket, waiting for a doctor to come and take the dead part of her away.

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Miscarriage is one of the final taboos in a social media age. The silence around grief leaves many women feeling isolated, but often they find that in opening up about their lost children others will share their miscarriage stories.

Bears of Hope founder Amanda Bowles says there's been a distinct shift over the decade since she started the support service.

High profile people have started telling their stories -- including Hugh Jackman and Deborra Lee-Furness, Beyonce, and Gordon Ramsay -- and October 15 is marked internationally as pregnancy and infant loss remembrance day.

But while there's more discussion about miscarriage, Bowles still sees attitudes that stop people seeking support.

"Some people can have a miscarriage and, whilst usually fairly upset at the time, can work through that and rationalise it, sort of piece it all back together and continue on," she tells AAP.

"But there's a large proportion of families who need some more support ... and that, too, is OK. It does not make them unusual or different."

Claire (not her real name) found the loss of a baby a taboo subject, enshrined in the expectation of not announcing a pregnancy before 12 weeks.

"To me it feels like this is because if something does go wrong then you can quietly deal with it," she tells AAP.

"People want to celebrate with you but commiserate, not so much. This feeling of having to deal with it in secret is isolating and makes it harder to reach out for help."

The culture of silence led her to believe people dealt with miscarriage quickly and she was surprised to find herself grieving.

Claire, now 31, learned she was pregnant with her second child just before Christmas in 2014. But at a dating scan the sonographer told her it looked like a blighted ovum, not a baby. Another scan a week later confirmed the baby wasn't growing.

Her first baby had been a "textbook pregnancy" and Claire never expected everything could go so wrong.

While doctors gave lots of information about what to expect medically, Claire says no one prepared her for the emotional impact.

"It also felt that, given how little it was talked about, grieving over an early miscarriage wasn't a normal thing to do," she says.

"I felt a little embarrassed that I was so upset over a baby I never met."

Claire wound up with postnatal depression, anxiety and stress, and struggled with not knowing what to tell people. Many were uneasy at finding out, changing the topic or saying unhelpful things, such as she would have another baby or at least she hadn't seen its heartbeat.

The gap between support available for a pregnancy, with midwives, doctors, maternal health nurses and community clinics, and for a miscarriage was stark.

"With my miscarriage I was lucky enough to have medical staff present for the surgery. But after that you are left to deal with it on your own," Claire says.

"I had my Bears of Hope bag but beyond that I was left to search the internet for services, ways to remember my baby or even support groups."

Australia doesn't collect statistics on how many babies are lost before a pregnancy reaches 20 weeks. A commonly accepted figure is one in four pregnancies end in miscarriage, suggesting almost 100,000 children lost each year.

However, obstetrician Professor Stephen Robson says that statistic is based on a study from the early 1990s and the situation is more nuanced. In younger women it's maybe one in eight but for those in their late 30s and early 40s it could be as high as one in three.

The demographic shift towards having babies older has probably made miscarriage a more common experience - one with higher stakes.

"Because of their career or they haven't met the right person or it's just not the right time, (women) delay it and then are often more desperate to get pregnant," Robson says.

"You just feel that sense that time is beginning to slip away from you, so when you have a pregnancy loss it can be really devastating."

Bowles says the statistics don't matter; every loss counts.

She points out breast cancer is also common, but there's more respect for those with the disease.

"Just to say it's common, and you can have another one or you can move on or you'll be OK is not an acceptable response to anybody," she says.

After miscarrying in 1997, Sam Blandford felt like people dismissed her loss.

"Because they didn't physically see a baby ... I think they went, 'She must be fine, it will be OK ... it was so early it doesn't matter'," she says.

Sam didn't know if she would be able to fall pregnant because of her history of anorexia but fertility treatment worked when she was 25.

An initial scan showed she was pregnant with triplets but a couple of weeks later Sam started bleeding. One of the babies had died.

A month later, she was the matron of honour at her sister's wedding when she started miscarrying again and lost the twins.

"Mountains of devastation would just keep coming over me," she tells AAP, remembering crying for two weeks.

"In shopping centres if I would see a pram, I would just burst into tears. Sometimes I hated women and their babies ... I just hated what they had and I thought, 'I can never have that'."

Rebecca Klemke knew about miscarriage in an abstract sense from studying biology but wasn't prepared for the reality.

"If people talked more about it, it wouldn't be such a shock for women," she says.

When Rebecca, 32, fell pregnant in late 2015 she had one friend who was midway through a pregnancy and another who'd just had her first baby and she was excited at the thought of their children growing up together.

Then she suffered cramps, followed by bleeding. She headed to the emergency department in immense pain.

"You're sitting amongst everyone else waiting, worrying, not doing anything, bleeding more. Finally you get in to see someone, waiting another five hours for blood tests, waiting more hours, more hours, more hours for results, and then being sent home."

The morning brought more bleeding, another hospital visit and another obstetrician, who told her humans are really bad at reproduction and it was nothing she had done wrong. Rebecca took that clinical approach relatively well.

"Despite being absolutely devastated and in tears, I could tell myself it's OK ... it wasn't viable anyway," she says.

Her husband David had a friend whose wife had miscarried and who checked on him daily but he says without similar support, Rebecca was in meltdown.

The next time Rebecca fell pregnant she was scared to share the knowledge even with her husband. On David's part, he says the second time he tried to keep himself distanced from the idea of having a baby.

Rebecca had family history of difficulty with pregnancy hormone levels and pushed her doctors to check, leading to a stressful day of driving from clinic to clinic chasing referrals and blood tests.

At the end of this, she went to the bathroom and found she was miscarrying.

"Emotionally I just kind of broke, just crawled into bed and tried to keep it together."

One of the most frustrating things was being told by doctors they weren't in the demographic where fertility problems are expected, and to just keep trying. Rebecca was told no medical investigation could happen until after three miscarriages.

Days after we spoke she miscarried a third time.

Robson believes it could be easy for medical staff to underestimate the devastation of miscarriage, particularly if a woman has ended up in the emergency department.

"It's very easy to be part of what seems like just a bit of a production line. They may not even see a doctor after the procedure; they may be told by the nurses to just go and see their GP," he says.

"I can see how there would be a strong perception that you just get through the curette and shoot off home and the problem goes. It can be a very lonely experience for a lot of women."

It was important doctors offered the opportunity to talk about what's happened and why and what it may mean for another pregnancy.

Many find their approach to pregnancy changes after experiencing miscarriage.

Claire remembers being unable to look at ultrasounds until the sonographer confirmed a heartbeat.

"I kind of switched from the mentality of knowing that miscarriage happens to one in four to suddenly, well, I'm one of those statistics, if it's happened once it could happen again."

When we speak, Fiona Wilson is three days overdue with her "rainbow baby" (one conceived after a pregnancy loss). Previously she had approached every pregnancy wanting to tell the people important to her immediately, but this time she waited.

A year earlier Fiona was excited and terrified at the thought of having a second child.

She went to her first obstetrician visit with "blind faith" that everything would be fine, although as a nurse she knew the miscarriage statistics. A fortnight later she returned for another ultrasound and her baby had no heartbeat: "That was instantaneously devastating".

"Once I knew that our baby had died, I really felt like there was something dying inside of me," Fiona tells AAP.

"I felt emotionally drained ... and it was a very strange feeling of not wanting to let go of my baby but also actually feeling like part of me was dying."

These women speak of the importance to their grieving of sharing their story and hearing the tales of others. They'd like to see greater community understanding of the grief families feel for their lost children, and support to remember them.

Claire keeps the Bear of Hope she got in hospital on display and lights a candle next to it at Christmas, Easter and the anniversary of her surgery.

The teddy Fiona got stays in her bed every night, "and probably will until my current baby is out of my tummy safely". Baby Lilian was born healthy four days after we spoke.

Rebecca and David are still trying for a baby and have made sure they talk about what's happening to keep strong support around them.

Sam marks her twins' due date every year and keeps a picture of a mother and baby giraffe she bought for their nursery.

"People think you can just dismiss it for evermore but it doesn't work that way. I still to this day think, 'did I do something wrong?'" she says.

"It doesn't stop me moving on in the world and getting on with things but it never leaves you."

* Bears of Hope grief support line 1300 11 4673 or [email protected]
* Lifeline 13 11 14
* Australian readers seeking support and information about depression can contact the Depression Helpline (from 8am to midnight) on 0800 111 757.

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