Childbirth is daunting for many women but for those with tokophobia, the extreme fear that takes hold, affects their daily functioning. Laura Drysdale reports.
“I thought my baby and I were doing to die,” says Kate, a mother to a baby girl. “I tied up all my affairs because I didn’t think I would come out alive. The fear was so extreme.”
She stifles tears as she describes what it was like to go through pregnancy with tokophobia, a severe fear of childbirth. It seems detached from the life she leads now with her partner and daughter. But the emotion is still raw.
“I struggled to focus on anything else. I had a feeling of impending dread”, she says. “It was very difficult. I desperately, desperately wanted a baby; my daughter was planned and my partner and I really wanted her. But I didn’t know how I was going to get through the pregnancy or how I was going to get the baby out.”
Kate, who does not want to be identified, was diagnosed with tokophobia, when she was around 17 weeks pregnant.
Extreme anxiety around the birth meant she struggled to go to work, attend antenatal classes and even step foot into a hospital; whilst the worry was also making her physically sick.
“I couldn’t even go to scans, I was crying so much, just terrified, absolutely terrified,” she says.
A consultant she was seeing during her pregnancy referred her to a perinatal mental health team when she turned up to an appointment in the grips of a panic attack.
As her pregnancy was progressing, her symptoms were becoming worse and more overwhelming.
“My mood was very, very low. My anxiety was sky high. I felt like I was living with a monster,” she says.
The perinatal mental health team worked with Kate to try to alleviate her fears and reduce the chance of her feeling her birth was traumatic.
She underwent Cognitive Behavioural Therapy and graded exposure to gradually introduce and get her used to needles, the hospital environment and the labour ward, whilst working with midwives to put a labour and delivery plan in place for her elective caesarean section.
“It’s still slightly surreal to think that I have done it and we survived,” she says, describing the delivery as the best part of her pregnancy and giving her thanks to the support of midwives and the perinatal team.
“Motherhood] is amazing. It is incredible. After I had my little girl, my mental health has been absolutely fine.”
Kate is one of between 2.5 per cent and 14 per cent of women thought to be affected by tokophobia. “Be open and talk about it”, she says, in advice to other women feeling fearful.
“If I had said something sooner, I wouldn’t have had 17 weeks of hell feeling like I was going crazy.”
“Being worried and frightened about birth isn’t uncommon,” says Claire Marshall, a specialist nurse in Humber Teaching NHS Foundation Trust’s perinatal mental health team, from mild to severe. “Women are often worried about it. To a certain extent, it is normal.”
But those with tokophobia have a “severe fear or phobia of birth”, she explains. Some women may avoid getting pregnant, others might request a caesarean section to avoid vaginal delivery, and in some cases, women may consider termination.
The severe anxiety starts to affect a woman’s daily functioning, says Claire. They might find that they are constantly thinking about the birth.
Her team, which supports women and families with all kinds of mental health problems, has noted an increase in referrals relating to tokophobia.
She is doubtful though that the rise reflects an increase in the number of women experiencing tokophobia.
“We are talking a lot more about tokophobia,” she says, and obstetricians, doctors who specialise in pregnancy and childbirth, are asking questions about women’s fears.
“It maybe that just in doing this work we are automatically screening more women who previously might have suffered in silence.”
“In the last 18 months there has been more research in this area,” she adds.
“I think clinically we are recognising it more and mainstream media are also voicing this for us so perhaps women and their families are more aware.”
It goes without saying that the earlier on in pregnancy that women are identified as having tokophobia, the more that can be done to support them.
But diagnosis is not always straightforward and at times, Catriona Jones, a senior research fellow in maternal and reproductive health at the University of Hull says, women in the area have been referred into services later in pregnancy, giving “very little time to do good work”.
“Fear of birth to an extent is quite a normal thing that women actually have,” she explains.
“So to an extent you can expect a certain fear of childbirth just to be alleviated through knowledge gain and through attending antenatal preparation classes.”
But for some women, that fear does not go, and can escalate as the pregnancy continues.
Catriona, also a lecturer in midwifery, having previously worked clinically as a midwife, is working with academics, healthcare professionals and commissioners to develop a care pathway for tokophobia.
“Part of the reason for the pathway is to help identify the women that might need additional help, and to identify them early,” says Claire, one of the clinical professionals with whom Catriona is working.
Routes for women would likely include therapy, peer support, counselling and exposure sessions to help relieve fears.
Women with a fear of childbirth often request a caesarean section, says Catriona.
“In reality, what it would appear from the research,” she says, “is that they want to feel powerful enough to be able to go through childbirth and come out of it well, happy and satisfied.”
Catriona, Claire and Julie Jomeen, a Professor of midwifery at the University of Hull will be shedding light on tokophobia tomorrow at the British Science Festival, which runs until September 14.
Their panel discussion, entitled the The Fear of Childbirth, will take place from 2pm until 3pm, at The Cube, Plaza, at the university.
It will consider how pregnancy and childbirth is “an exceptionally vulnerable time for a woman’s mental health” and look at research surrounding tokophobia.
“Pregnancy and childbirth are an exceptionally vulnerable time for a woman’s mental health”, the 16-plus event preview states.
“Anxieties are normal, but sometimes extreme pathological fear can take hold and affect daily functioning. This panel discusses research on tokophobia – the fear of childbirth – and supporting women post-partum.”
To book tickets, visit www.britishsciencefestival.org
Women with a fear of childbirth may have specific fears around things like childbirth pain, injury to themselves of their baby, death or not understanding what might happen, according to parent charity NCT.
“In addition, women already fearful of hospitals, injections, or of being exposed or naked, may find their fear of childbirth exacerbated by these pre-existing fears,” the charity website states.
“If a pregnant woman has fears related to labour and/or vaginal birth, she is more likely to have a caesarean birth, either planned or unplanned; she is more likely to use pain relief and she is more likely to have negative feelings about the whole birth experience. In addition, her risk of postnatal emotional and psychological problems increases.”