This week marks Baby Loss Awareness Week (9-15 October), but despite around one in four pregnancies thought to end in a miscarriage, many have never heard of a 'missed miscarriage'. In fact, some people sadly don't learn about missed miscarriages until they've experienced one personally.
Also known as a 'silent' or 'delayed miscarriage', a missed miscarriage is when the baby has died in the womb but the mother doesn't display any of the typical signs associated with a miscarriage, such as heavy bleeding or cramps. "A silent miscarriage is typically diagnosed at a routine ultrasound scan," explains Kate Marsh, a midwife who works with the baby loss charity, Tommy's. "Although sometimes people say they already suspected it had happened, because there was a change in their usual pregnancy symptoms, or they just felt different somehow."
The silence and stigma around miscarriage is something that Tommy's is hoping to change, as well as educating people on missed miscarriages. Through their growing online support network, the charity has been able to connect women and men who have experienced a missed miscarriage, enabling them to share their journeys and open up the conversation around baby loss.
A 'change' is something 27-year-old Sarina, who experienced a missed miscarriage last year during her first pregnancy, remembers well. "In the lead up to our 10-week reassurance scan, I remember saying that something felt off," she told Cosmopolitan. "I just didn’t feel pregnant anymore. I couldn’t explain it, and I knew it sounded weird, but I could just feel that something was wrong."
As Sarina's concern grew, so did the amount of time she spent searching for information online – but nothing she found suggested she may be experiencing a silent miscarriage. "I was checking everything online, and searching 'I don't feel pregnant anymore'," she said. "But everything I found just reassured me that it was normal. I’d never heard of anything like a missed miscarriage so I came to the conclusion that my hormones were just settling down as I came to the end of my first trimester."
Sarina's ordeal is one that many women, including 35-year-old Alice, can relate to. Like Sarina, Alice experienced a silent miscarriage last year, and didn't have any warning signs. "I’d been feeling so rubbish and I was nearly at 12 weeks so I was thinking I was safe," she explains. "I noticed a bit of spotting, so went for a spontaneous scan because I was worried. Spotting can be totally normal sometimes, so it's very confusing."
Alice's lack of symptoms up until that point meant hearing that she'd sadly lost her baby came as a total surprise. "When I went for my scan and the midwife said there's no heartbeat, it was such a shock," she recalled. "Even the midwife was shocked. Initially she said 'Oh a little bit of spotting, that’ll be fine', but when she did a further examination she realised it wasn’t fine at all."
As midwife Kate points out "any type of miscarriage can cause shock, upset and anxiety", but "the lack of warning signs can make a missed miscarriage hard, as people may feel guilty for not knowing it happened."
Debra, who also experienced a missed miscarriage earlier this year, hasn't been able to shake this feeling. "I struggled with not having what I thought of as classic pregnancy symptoms, like morning sickness," she explained. "But friends told me I was just 'lucky' and every pregnancy was different, and Dr Google agreed, so I left it."
When her doubts grew, Debra decided to book in for a scan at seven weeks – that's when she was told the devastating news that she'd miscarried. "My heart broke there and then and I couldn’t breathe," she recalled. "Silent miscarriages were very rare, said the internet, and very rare things happen to other people – they don’t happen to you."
While nothing could have prepared any of these women or their partners for the experience of pregnancy loss, all three agree that if the conversation about miscarriage was more open, and if more research was easily accessible, they might have been aware of risks like silent miscarriage.
"When you have a miscarriage, you're desperately searching for answers," Sarina says. "Of course everybody is different, and there may not be a reason for a miscarriage, but the information that is out there is just not enough."
We need more research into missed miscarriages
But why is there so little information out there about miscarriages, and silent miscarriages in particular? At the moment, midwife Kate points out, it's all to do with statistics – or a lack thereof. "The UK doesn't currently record miscarriages," she says. "It's something we're campaigning to change at Tommy's, because without this data the scale of the issue remains hidden and tackling it isn’t prioritised."
Without official figures from the NHS, the charity estimates that one in four pregnancies end in miscarriage, with women under 30 having a one in ten chance of a miscarriage, a figure which rises to two in ten for those aged 35 to 39.
As for the potential causes of these miscarriages, Kate explains: "If a miscarriage happens in the first three months of pregnancy (known as early miscarriage), it's most commonly caused by genetic abnormalities in the baby." Unfortunately, Kate stresses we often just don’t know the exact cause "because miscarriage research is historically under-funded." In many cases she says, this can leave people "blaming themselves in the absence of answers."
To encourage the NHS to fund research into what causes miscarriages, and whether expectant mothers can do anything to prevent them, Debra says we all need to speak up. "As women we are hideously uneducated about our own bodies and our medical system just doesn’t prioritise women’s health," she emphasises.
"Miscarriage is common, but it’s not normal and we deserve better healthcare. So, similarly to how talking about mental health has completely changed the conversation and awareness that now exists, the same goes here. You wouldn't have to have three heart attacks [like you do a miscarriage] before your doctors started looking into what could be the problem."
Midwife Kate agrees. "Despite affecting so many people, miscarriage is rarely discussed, because of persistent stigma in society," she points out. For this reason, she stresses how vital campaigns like Baby Loss Awareness Week and support groups like Tommy's are when it comes to breaking the deafening silence.
It's support groups like Tommy's, amongst others such as The Worst Girl Gang Ever, that have been a lifeline for all three women in what they describe as the darkest point in their lives. "For weeks after [my miscarriage] I felt numb and I couldn’t process it," says Debra. "There was no NHS support for my mental health at all. We were just left to get over it. I needed empathy and guidance and answers and I couldn’t find them where I thought they were going to be, so I felt very disorientated and lonely."
She adds that The Miscarriage Map, a book by Dr Sunita Osborne, was also a source of comfort.
Similarly, Sarina and her husband Vik felt abandoned too. "More needs to be done in terms of mental health support and grief counselling," stresses Vik. "After the miscarriage happened, there was no sensitivity or empathy. Almost immediately we were asked to sign papers about what we wanted to do with the remains, when that was the last thing on our minds."
Sadly for the couple, their experience of missed miscarriage has made them apprehensive about starting a family. Just a few months after their first, the couple dealt with the loss of a second pregnancy, and they've since made the decision not to try for another baby just yet – "mentally and physically Sarina's body has been through enough trauma," Vik explains.
They add that within their Asian community especially, miscarriage isn't talked about and it's something they want to challenge. "There’s an old stigma in the Asian community that once you’ve been married for a few years, you’re expected to have a baby and questions about when you’ll have one start popping up. So to avoid that we wanted to share what happened. It’s heartbreaking enough to deal with a miscarriage, let alone having questions about when you’ll have a baby being thrown at you on top."
But, amidst the darkness, they've found hope and made steps towards healing within the Tommy's community. "Talking about my experience made me realise that my feelings were normal, and that those random moments of anger or disappointment or upset, were all valid," Sarina points out.
Like Sarina, Alice still relies on the support network, and she welcomed a healthy baby last month. "I’ve not been able to remove myself from that group yet, despite being in a very different place," she admits. "The group is still very important to me."
For Alice, the group now offers an outlet for her to help others as they navigate the loss of a baby. "The darkest point is now, but it does get easier," she says to those currently experiencing a missed miscarriage. "Whether you eventually have a baby, or you find another way to become or grow your family, like adoption, it doesn’t get darker than those moments, but you will find a way out of them."
If you're looking for support or more information about premature births, stillbirths or miscarriage, Tommy's have a free helpline 0800 0147 800 (open 9-5, Monday to Friday). There's also a Facebook group.
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