Breaking down the stigma around miscarriage and stillbirth

Despite the stigma, voices calling for a change in the way the medical sector and society deal with miscarriages and stillbirths are getting louder.

by Julia Migné

There is no message on the box of a pregnancy test to tell an expectant mother that one in four pregnancies does not end in a live birth. And later when that woman walks into a gynaecologist’s waiting room, though she is likely to see posters about breast cancer and safe sex, the chances of her finding any information about miscarriages or stillbirths is rare.

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One in four pregnancies does not end in a live birth but there is no warning printed on pregnancy tests. © Esparta Palma at Flickr

Kathryn van Beek, an award-winning playwright and zine creator from New Zealand had two miscarriages.

“My first miscarriage was quite traumatic. We’d picked out a name, seen the baby’s heartbeat and started decorating the nursery – so we were totally invested and not expecting a miscarriage at all,” she says.

This feeling of devastation is often associated with a complete panic of what’s to come because women across the globe are often poorly informed on what is actually supposed to happen when they are experiencing a miscarriage or a stillbirth.

“I don’t think most of us have seen babies that have died so that in itself was a shock.”

More and more women tend to use pregnancy apps nowadays and while those apps are helping to create a sense of community and provide the mums-to-be with useful information, nothing is built in to help them when things go horribly wrong and they end up losing their babies.

“I think it’d be ideal if there was a ‘what if my pregnancy ends’ offshoot that was built to the pregnancy apps,” adds Dr Deborah Rich, a licensed psychologist and founder of the Shoshana Center for Reproductive Health Psychology. “So that you didn’t feel like ‘I’m not in this group of women anymore because I fell off and I’m not pregnant anymore’.”

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“I think it’d be ideal if there was a ‘what if my pregnancy ends’ offshoot that was built to the pregnancy apps.”

This lack of information makes an already traumatic experience even more stressful by leaving the parents feeling unsure of what the procedure is supposed to be like. While Kathryn recognised that the health care system in New Zealand is excellent and that all the staff she dealt with during her operation “were lovely”, she felt completely at a loss when she was sent on her way without any kind of follow-ups being scheduled.

“That’s fine for routine surgery like a laparoscopy, but a miscarriage is a bit different in that although it’s routine for the hospital it’s potentially quite shattering for the patient,” she says.

“There’s fallout to deal with afterwards and I couldn’t get any help from the midwife I had contacted or from my GP. It didn’t occur to me to call the hospital for follow-up information and I only found out months later that they were supposed to call me. I definitely felt as though I’d fallen through the cracks.”

Kiley Hanish, founder of the Return to Zero Foundation, experienced a similar lack of guidance in the US following the stillbirth of her baby boy. Thirty-five weeks pregnant at the time, she went to labour early and had to be rushed to the hospital where a doctor, completely unknown to her, announced that a heartbeat could not be found indicating that her baby had died.

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Kiley Hanish founded the Return to Zero Foundation. Photo Courtesy of Kiley Hanish

Kiley was then sent back home without receiving proper guidance on what needed to happen even though miscarriages and stillbirths are far from being a rare occurrence in hospitals around the world.

Some countries, nevertheless, seem to be doing better than others in terms of training care providers to handle patients going through these traumatic experiences. Dr Rich explains that “both the UK and Australia have standards of practice that have been implemented across the profession of obstetrics and gynaecology”.

In the UK, the National Institute for Health and Care Excellence (NICE) provides national guidance and advice to improve health and social care and has a full set of guidelines dedicated to the diagnosis and initial management of miscarriages.

NICE also provides recommendations on how to follow up with a patient after she has suffered a miscarriage, emphasising that care providers need to discuss any questions the patient has about her miscarriage but also “assess the woman’s psychological well-being and offer to counsel if appropriate”.

Doctors and nurses are finally advised to provide additional information to their patients such as the Royal College of Obstetricians and Gynaecologists’ patient information leaflet on early miscarriage.

When coming back to the hospital for the birth induction, Kiley still felt completely under-informed about what was going to happen to her and to her baby.

She had been told that she could spend some time with her dead baby after the birth and that a photographer would be present but both she and her husband felt unsure of what they were supposed to do.

“I don’t think most of us have seen babies that have died,” she says, “so that in itself was a shock.”

Kiley and her husband didn’t get any guidance on how they should hold their baby boy or on why it was important to give him a bath, dress him in clothes, and take as many photos as possible with him. “We thought that was strange,” she explains, “but if I knew what I know now I would have taken so many more photos.”

More and more hospitals now recognise the importance of providing opportunities for memory making to parents going through the traumatic experience of having a stillbirth, but training medical professionals to guide families through this is still crucial.

Kiley regrets the fact that she didn’t really have a chance to say goodbye to her baby who was put in a box in front of her “like he was going to the trash”.

Dealing with their babies’ remains is something that is incredibly difficult for families experiencing a stillbirth or a miscarriage but professionals such as Dr Rich emphasise that the way these remains are dealt with can have a huge impact on the psychological well-being of grieving parents.

Kathryn explains that in New Zealand, parents receive a specimen jar several weeks after the operation takes place whereas in the UK baby’s remains can be cremated.

“I would love people in New Zealand to have the option of receiving cremated remains in a little kete (flax bag),” she adds. “It would make any kind of memorial activity much easier and more meaningful. We just buried our specimen jar beneath a rose which was less than ideal and diminished the significance of the occasion somewhat.”

Funeral directors are also becoming more aware of the importance of having a proper burial and ceremony for stillborn and miscarried babies. LeighAnne Wright, a funeral director in the UK, had a family come to her five years ago who were struggling with their baby’s burial because no clothes would fit him.

At just 21 weeks, no clothes would fit his tiny body and that really affected the grieving parents, so LeighAnne decided to help them in the only way she could think of: by making clothes tailored to their baby’s size.

“I realised that this is actually a huge part of the grieving process,” she explains. “So I began making more and more clothing.”

From there, LeighAnne launched Little Things & Co, a charity offering practical and emotional support to those who have suffered the loss of a baby. In five years, the charity has dressed more than 3,500 babies and now supplies 31 hospitals around the country.

Amanda, who received support from Little Things & Co after her stillbirth in 2014, told BBC Scotland: “It would seem like such a small thing but if you think about it who would want to bury their nan, their mum, their grandad with no clothes on? You just wouldn’t so why would you for a baby?”

The organisation now also offers a suite of services which includes a support group for bereaved parents and the possibility for them to have white peace birds released at their child’s funeral free of charge.

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Little Things & Co produces tailored-made clothes for miscarried and stillborn babies. © Little Things & Co

“We provide practical items,” explains LeighAnne. “Quite often with a tiny baby the coffin is so small that only one person can carry it and then the other parent can feel somewhat left out, so our cradles are for both to carry.” The charity also provides dressings for the graves to “make the place of rest a gentler image” for parents.

Following a miscarriage, most women across the globe have to go back to work quickly after having lost their babies. However, Dr Rich explains that “there is research which shows that return to work after pregnancy and the timing of this return has an impact on psychological outcome altogether”.

For many women, this is the factor that really creates or amplifies whatever difficulties they are having following their miscarriage. In the US, women frequently have to resort to having unpaid leave or they can get paid leave if they are assessed by a doctor as having a short-term disability.

The financial pressure associated with the stigma surrounding miscarriage and baby loss, in general, makes it hard for those women to take care of themselves both physically and psychologically.

“If you broke your leg and your work required that you’d stand you’d need a doctor’s release to go back to work,” adds Dr Rich, “but we just don’t judge emotions in the same way! I think we forget that we had a pregnant woman that requires healing.”

This is why Kathryn has been campaigning for an amendment to the Holidays Act in her country. “When I read through The Holidays Act, I realised miscarriage is not specifically included as a reason to take bereavement leave,” she explains.

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Kathryn van Beek has been campaigning for an amendment to the Holidays Act in New Zealand. Photo Courtesy of Kathryn van Beek.

She herself was able to access bereavement leave after her miscarriage but only because she had “a great employer” who allowed her to do so but this is far from what every woman in New Zealand experiences.

“When I asked other people about their experiences, I heard the full range – from people who were fully supported by wonderful employers to people who were denied bereavement leave and felt quite bullied at what was already a devastating time for them. I don’t think it’s good enough to leave it up to individual employers to decide whether or not an employee’s miscarriage counts a bereavement.”

The proposed amendment to The Holidays Act wouldn’t make much of a difference to employers but it would mean more to people going through this traumatic time, as it would provide them with the option to do take a leave if they don’t feel ready to go back to work.

“It’s a small change that will make a big difference to some people during a hard time. And it sends a message that our society does care about people who go through miscarriages,” says Kathryn.

This feeling that nobody cares is closely linked to the stigma surrounding baby loss. Even women themselves don’t talk about it, often feeling somehow ashamed of having lost their baby. “I felt a huge weight of shame which I think stemmed from feeling as though my body didn’t work properly or as though the miscarriage was some kind of personal failing,” explains Kathryn.

“It is also an awkward thing to talk about it as chances are high that at the same that time that you are going through a miscarriage, other members of your peer group are having successful pregnancies.”

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Kiley’s husband Sean, who happens to be a film producer, felt the need to process his grief a few years after the stillbirth of their son by writing, directing and producing a movie to share their story with the world.

His Emmy-nominated movie Return to Zero, which starred Minnie Driver and Paul Adelstein, was the first feature film to tackle the taboo subject of stillbirth.

“It wasn’t until he started getting very active on Facebook that we were connected to a global community of parents who’ve been through this type of loss,” remembers Kiley. “And then I realised how important it was to share our story because without even the movie being finished people loved the idea that there was going to be a movie that validated their experience.”

With the boom of social media, parents have started to talk about their experiences a bit more openly than before. According to a survey conducted by Tommy’s, a British charity, out of over 1,000 women surveyed 84% said they felt there was an online community after baby loss.

Georgie Hayden, a food writer from London, whose son Archie was stillborn, says on Tommy’s website: “I’ve found the baby loss network to be really, really positive and through that forum I’ve made some amazing friends.”

A few celebrities, including members of the British royal family, have also taken to Instagram or other media recently to share their own struggle with miscarriages and stillbirths. Dawson’s Creek star James Van Der Beek posted a heartfelt message just a month ago about the difficulty he and his wife faced with their three miscarriages.

The actor also called for society to come up with a different word, arguing that “‘mis-carriage’, in an insidious way, suggests fault for the mother – as if she dropped something, or failed to ‘carry’.”

Tommy’s recent campaign #TogetherforChange intends to raise awareness of the importance of “more open dialogue” by challenging the stigma of silence surrounding baby loss.

“We see so many women connecting not only with our research and midwives but with each other – sharing their experiences, offering advice and support and coming together to tackle the stigma of baby loss,” says Siobhan Gray, Head of Brand at Tommy’s, in a statement.

“We hope that by encouraging and supporting mums and dads to speak about baby loss, we can move to a deeper understanding of their experiences which will, in turn, make it much easier for us to engage in research and care for bereaved parents.”

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