It starts with a traumatic birth. A woman’s pregnancy may end in unwanted medical intervention, complications, an emergency C-section, a loss of feeling in control. Then, she shares her story online as part of her healing process, unwittingly feeding the fears of pregnant women frantically Googling their worst fears. These woman, filled with the horror stories they’ve read online, go into their birth more fearful of what could go wrong, and the stress makes their labour longer and more painful. And the cycle continues.
Fear of childbirth, otherwise known as tokophobia, isn’t talked about all that often, even among the women suffering with it. So when Catriona Jones, senior research fellow in maternal and reproductive health and lecturer in midwifery at the University of Hull, spoke at the British Science Festival about the need for early detection and treatment of tokophobia, an article in The Guardian quoted her saying it was on the increase, and that scare stories on social media were to blame.
“When I spoke with the journalists at the festival, I wouldn’t fully commit to saying that levels of tokophobia are on the rise, nor did I say that social media was the leading cause; I was misquoted,” Jones says.
The truth is that the university’s research team has found that social media can help to both stoke and quell childbirth fears. Telling birth stories on forums including Mumsnet can be cathartic, Jones says, but the media relating to birth that women are exposed to online may also play a part in setting birth up as a negative experience.
“But we were never saying that social media causes tokophobia, and we’re not telling women to stop telling their stories.”
Nevertheless, the article caused a media storm. The attention put a spotlight on an overlooked condition, and, ironically, encouraged women to get in touch with Jones and her colleague and professor of midwifery Julie Jomeen, who leads on the university’s perinatal mental health research programme, to thank them for talking about the issue.
“They told us they didn’t get pregnant because of their fears, that if they’d known people who’d have helped them throughout pregnancy it would’ve made big difference, that they had one baby and would’ve had a second,” Jomeen says.
Tokophobia can affect women on their first pregnancy, subsequent pregnancies, or discourage them from ever going through with a pregnancy. It can be triggered by many things, including fear of pain, a previous difficult childbirth, depression, or sexual trauma.
Researchers from Ireland reviewed 33 studies over the past 50 years and concluded that approximately 14 per cent of women may experience severe tokophobia. Many more cases go under the radar, both from women who never get pregnant because of their fears, and those who are reluctant to tell anyone. The University of Hull’s tokophobia research stemmed from medical professionals saying that they’re seeing women with tokophobia too late on in their pregnancy.
“They say that, by the time women tell them they’re frightened, it’s 37 weeks into the pregnancy and birth is imminent, and it’s challenging to intervene at that late stage,” Jomeen says.
But routine antenatal appointments aren’t long enough for women to speak in depth about their worries, argues Siobhan Miller, founder of The Positive Birth Company, which supports women to use hypnobirthing.
“It’s an under-resourced area and midwives haven’t got the time,” Miller says. “Often, women see different midwives for each appointment, so the woman has to start from the top each time and they keep their fear quiet until their last appointment, when they’re on the cusp of giving birth.”
And when pregnant women suffering with this fear don’t know who to turn to, Miller argues, they turn to social media, where they’re likely to find the worst-case scenarios.
“We’re hearing about people’s traumas and not the other side, that voice isn’t there; birth can be amazing, or at least straightforward. These stories are causing women to be really frightened about it and that’s damaging,” says Miller, who started #PositiveBirthStoryProject on Instagram to encourage women to share happier birth stories.
There is support out there for those who’ve had traumatic births – including CBT and the NHS’s debrief sessions for women who develop tokophobia after a traumatic birth, where a senior midwife runs through the woman’s notes to understand what happened. But with such long waiting lists, the internet gives people an outlet while they’re in line for treatment.
“There’s anonymity too, like on Mumsnet, for people finding it hard to bond with their baby and having difficulty telling people,” Miller says.
And these negative stories – both online and offline – can have a real impact on women already fearful of giving birth. Research has found that adrenalin, the hormone released when we’re scared, takes blood away from womb to other organs as part of the fight or flight response, which can prolong birth and make it more painful.
A study in 2013 found that women with moderate to high levels of fear had a more negative birth experience and were more affected by an unplanned caesarean section or instrumental vaginal delivery, and women with high levels of fear who had an unplanned C-section had a 12-fold increased risk of reporting a negative birth experience.
To combat negative birth experiences, Miller recommends that more women should consider giving birth at midwife-led birth centres – but too few of them know that this is an option.
“Midwives are experts of facilitating the normality of birth whereas in a hospital it’s led by consultants who are experts in complications, and intervene to minimise risks,” she says.
“Birth centres and homes are more set up to aid relaxation, with dimmable lights and music playing, birthing balls and pools. Our environment has a huge impact on ability to birth a baby and a labour ward isn’t a conducive environment. Too many women don’t know this,” she says.
This, Miller argues, is because education around childbirth is lacking – and inaccessible to those on lower incomes. But if more women knew the benefits of this, she argues, the NHS would save a lot of money.
“If education and antenatal hypnobirthing or other classes were accessible for all, more women would choose midwife-led units, where intervention rates are much lower than hospital births.
“A lot of women aren’t going to birth centres because they think hospital is the place to go, but if education was accessible, more women would use birth centres and opt for home births and have better outcomes.”
The support women need to help reduce their fears is often lacking. There has been a small increase in midwife numbers in the past few years, which comes nowhere close to matching the UK’s high birth rate, and a quarter of all NHS trusts in England still have no midwifery units. Only a third of women in 2015 saw the same midwife throughout their entire pregnancy, and often, women aren’t given, or made aware of, their options regarding where they can give birth.
Dr Malcolm Dickson, consultant obstetrician and gynaecologist at Pennine Acute NHS Trust, says there are a small group of women who are terrified of labour, but it’s not so much horror stories on social media that are to blame as the places these women are going to give birth in; settings that are getting larger and more anonymous.
“People are going into large institutions, not small maternity units. It’s impossible to have community-based people looking out for you,” he says. “People are terrified of going to these large institutions where they don’t know who’s going to be there.
“I used to work in Rochdale, which was a small place, and all the midwives working there lived there. They’d bump into people. They were fiercely proud of their unit. Now, most maternity units are merged into super establishments and they no longer have ownership of a patient’s problems.”
No midwife working in Kensington and Chelsea hospital, he says, actually lives nearby.
One reason support is lacking is because research into perinatal mental health has only been particularly strong in the past 10 years, and a fear of birth hasn’t been recognised as something that can be pathological for some women until relatively recently, Jomeen says. There is recognition of the problem now, but no standardised approach to treatment or training.
Jomeen says her research team is looking into how healthcare can best implement support to lead to better outcomes postnatally, including continuity of midwifery care, psychological intervention such as CBT and graded exposure to hospitals, if the woman is fearful of medical environments. Trauma and fear left unsupported, she says, can lead to ongoing mental health problems and can affect the child up to adulthood. And this comes right back to social media.
“We really need to think of good quality care for all women because, if we’re able to promote best quality care so women come out of birth feeling really satisfied and positive about their birth experience, this will reduce the number of negative birth stories appearing online,” she says.