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Original article: https://www.google.com/amp/montrealgazette.com/news/local-news/tocophobia-when-fear-of-childbirth-is-extreme/amp

A measure of fear about childbirth is normal. But for some women, the fear is pathological — and can be so extreme that they avoid becoming pregnant.

The condition, which affects six to 10 per cent of women, is known as tocophobia, or tokophobia, from the Greek words for childbirth, tokos, and phobos, meaning intense fear.

Just as some people have phobias about spiders or snakes or airplane flights, women with tocophobia have an overwhelming fear of pregnancy and childbirth, explained Dr. Tuong-Vi Nguyen, a reproductive psychiatrist at the McGill University Health Centre, in an interview.

Unlike other childbirth-related conditions such as postpartum depression, tocophobia remains a relatively unknown diagnosis — even among many health professionals.

“It is a condition which seems to be under-recognized but which affects many women, causing tremendous suffering,” she said.

Nguyen, an assistant professor in McGill’s departments of psychiatry and obstetrics and gynecology, is working to raise awareness of the seldom-discussed condition, to let women know that treatment exists, and to develop targeted initiatives to help them.

It is her hope that, just as increased awareness of postpartum depression led more women to get help, raising the profile of tocophobia will cause more sufferers to seek treatment.

The condition has two classes: the more common secondary tocophobia, which can develop after a traumatic birth, and primary tocophobia — a deep-seated dread of childbirth that appears as early as adolescence and affects women who have never been pregnant.

Women with secondary tocophobia experience distress and suffering as their due date approaches, explained Nguyen, 33.

“We see some horrific stories of women delivering late, of stillbirth, of complications because they are high-risk — and they are terrified of being in a situation where they don’t have any control, where anyone can come in and examine them.”

Hana Bahad had to terminate her first pregnancy at 2o weeks in late 2015 after an ultrasound showed a fetal abnormality incompatible with life; ending the pregnancy was a profoundly traumatic experience for her.

Afterward, she was seen three times at the MUHC by Nguyen and joined a perinatal loss group facilitated by the McGill psychiatrist. Among participants in the group, offered free of charge, are women with secondary tocophobia.

“I met with other women who had had a loss and we shared what we had gone through,” recalled Bahad, now 28. “It was really a great help. When you hear other people’s stories, you are able to share.

“Your family tries to stop you from talking about it, but it is only by venting that you are able to get through it. … Without that help, I don’t know how I would have coped.”

Despite having fears about a second pregnancy, Bahad became pregnant again in early 2016 and, in November, gave birth to a son.

She said she was anxious throughout the experience and even now remains fearful that something could happen to the baby.

“I feel like I am dramatizing things more than I should,” she said. “But I can’t help it.”

In addition to perinatal loss groups, the MUHC provides help for tocophobia with individual cognitive behaviour therapy (CBT).

CBT, the most widely recognized treatment for phobias, is a first-line therapy for tocophobia; its goal is to change patterns of thinking or behaviour behind people’s difficulties in order to change the way they feel, said Nguyen, who was interviewed for a recent article on tocophobia in Québec Science.

Treatment at the MUHC is free of charge, but there is a six-month waiting list. Many Montreal-area private clinics offer CBT, as do some CLSCs.

Medication can be helpful, too — particularly when other mental-health conditions, such as depression or generalized anxiety, are also involved, she said.

Women with primary tocophobia, who avoid pregnancy and often have a fear of medical environments, tend not to come to the attention of people who can help them.

“It is women with primary tocophobia I feel we are failing right now,” Nguyen said. “Avoidance is very effective as a defence mechanism but, at the same time, it creates other problems: You get stuck in a phase of life without being able to move on developmentally.”

For women who choose to have children, pregnancy is a developmental phase — a period of adjustment in which they prepare for the arrival of a child, she explained.

“It is a time full of hope, but also very challenging.”

Growing up, Sara Tremblay knew she wanted a family — even pictured herself living in a small house with a picket fence and looking after her children.

“My husband and I knew we wanted children. It was in our future plans — but when the time started coming closer to that step in our lives, I started to be panicky about it,” said the information technology worker, now 31.

She began to doubt her capacity to be a good mother, she said, and to feel anxious at the prospect of becoming pregnant.

“I couldn’t understand why I was so anxious. For people around me, it seemed like the normal thing to do. But I would feel panicky whenever we talked about it.”

It didn’t help that some women in her circle would go on at length about pain and difficulty that had surrounded the births of their children. “I’m already anxious. Aren’t we supposed to support each other?”

Tremblay, who also has an anxiety disorder, has been undergoing cognitive behaviour therapy for a year with a psychologist. “It helps – but not enough,” she said.

Although she has discussed her fears with a gynecologist, her family doctor and a psychiatrist, she doesn’t feel she has received enough support.

“I don’t hold it against the health-care professionals — but it would be better if people were more supportive,” she said. “I just want some reassurance that whatever happens will be handled in a correct manner and I will have the help I need.”

Among those prepared to discuss their deep fear of childbirth but unwilling to be identified because of the stigma they associate with having a mental-health condition was a woman in her 50s we’ll call Sylvie.

She had been adamant since the age of 10 about not wanting children. Decades would pass before she learned the term tocophobia, but she knew this: She couldn’t bear to hear women discuss their pregnancies or births.

So extreme is her phobia that, when in 2015 she stumbled on an article in which an Australian woman described being helped to conquer her primary tocophobia (in countries including Australia, England and Ireland, multi-disciplinary clinics provide support to women with tocophobia), Sylvie suffered a panic attack and had to stop reading.

She said she could identify a few reasons for her tocophobia: Her mother, who had already had two children by different fathers, became pregnant with her at 40 in the late 1950s and “was ashamed of being pregnant.”

“We had a lot of secrets in the family — and my mother would frighten me about everything having to do with pregnancy,” she said.

As a 10-year-old, Sylvie saw a film of childbirth on television — and suffered her first panic attack.

“For 45 years, I was sure that I was the only woman on Earth with this phobia because I never heard anyone talk about it,” she said.

But in searching online with the keyword tocophobia, she found a host of articles. Sylvie has since joined a tocophobia support network, read testimonials from around the world, and launched a bilingual Twitter account on the subject, @tocophobie.

To contact Dr. Tuong-Vi Nguyen about tocophobia, email tocophobie@gmail.com.

Pregnancy with Tocophobia