Dushka Zapata’s second pregnancy in her late thirties ended in miscarriage. At the three-month prenatal check-up, the doctor broke the news to the hopeful mother. Neither of her twins had a heartbeat. Zapata’s life went from the crippling nausea of morning sickness to feelings of loss, sorrow and emptiness. Amid this whirlpool of emotions emerged another: shame.
“This made no sense to me intellectually so it took months to articulate,” she said in a post on Quora, the popular question and answer site. “I felt incompetent. Inadequate.”
Zapata’s story is not unique. Many people across the world go through similarly isolating experiences of sadness and shame following miscarriages — the loss of a fetus or embryo before 20 weeks, approximately five months, of gestation. What’s more, that isolation may be due to the misconceptions, blame and silence surrounding miscarriages, said Dr. Zev Williams, the lead researcher of a 2015 study on early pregnancy loss myths. With increased public awareness and support for the other emotional strains surrounding pregnancy, it’s time to shed light on the truth of early pregnancy loss.
Here are five commonly-held myths and their realities.
Myth #1: Miscarriages are rare
Miscarriages actually happen in one out of every four-to-six known pregnancies, or 15 to 25 percent of the time, according to the current scientific literature.
It is far more common than many people think.
A little over half of Americans incorrectly believe that early pregnancy loss occurs less than 6 percent of the time, according to an online study of over 1,000 people. Published in June 2015 in Obstetrics & Gynecology, the survey also found that of the 55 percent who believe miscarriages are uncommon, 10 percent further believed that the loss happened in fewer than 2 percent of cases.
Understanding of miscarriages is also not equal among genders, with men more than twice as likely to believe miscarriages are uncommon.
Myth #2: Miscarriage is the mother’s fault
Lifting heavy boxes, exercise, sex, stressful events, sexually transmitted disease, arguments and previous use of birth control do not cause miscarriages.
Yet, the same Obstetrics & Gynecology study found that the American public strongly believes these myths — even the highly-educated. Nearly half of the people with graduate degrees surveyed agreed that physical strain can cause a miscarriage, a concern which has been disproven in a study of working women who stand for long periods of time and carry heavy objects as part of their jobs.
Rather, “there’s hardly ever anything that a women could have done [to prevent the miscarriage],” said Dr. Jessica Farren, an obstetrician and gynecologist affiliated with Tommy’s National Centre for Miscarriage Research, the United Kingdom’s first national research center dedicated solely to researching early miscarriage. “It’s just bad luck — no lifestyle factors influence this,” she said.
Instead, 60 percent of miscarriages happen because of genetic issues or chromosomal abnormalities, said Williams. According to Williams, additional contributors to miscarriage are malformed fetuses, uterus abnormalities, hormone disorders, autoimmune disorders and blood clotting disorders.
Having a miscarriage also doesn’t mean a woman is more likely to have another. According to the Mayo Clinic, only 1 percent of women will have two or more miscarriages, a notable dip from the 15 to 25 percent chance of having the first miscarriage. And even after three consecutive miscarriages, a woman still has a 70 percent chance of a miscarriage-free pregnancy.
Despite being free of fault, those in Williams’s study who had had a miscarriage still felt guilty (47 percent), like they had done something wrong (41 percent), alone (41 percent), or ashamed (28 percent). Some believed that they could have prevented it (38 percent).
These concerns are the reasons why Williams and his colleagues decided to do their study in the first place. “We wanted to know what the general public thought so that we could understand why people were so embarrassed and ashamed to discuss it, and what the misconceptions were so we could help correct them,” he said. “I think there is a role now for advocacy and trying to get the message out to the public.”
Myth #3: It won’t be as traumatic as the loss of a child who was born
Real emotional trauma can arise from miscarriages. While it is difficult to pin down the numbers, as many as 48 percent of women may experience depression following the loss, some of it long-term. This is far greater than the approximately 12 percent of women who experience postpartum depression, cited by the Centers for Disease Control and Prevention.
Aside from depression, women can also experience post-traumatic stress disorder (PTSD) and anxiety. Farren found that 28 percent of women met her lab’s criteria for PTSD, 32 percent for anxiety and 16 percent for depression a month after a miscarriage, she reported in a preliminary study of 70 patients published in November 2016 in BMJ Open.
Feelings of anxiety peak and begin to abate at 4 months, according to Pamela Geller, a psychologist at Drexel University in Philadelphia. However, people may experience elevated levels of those feelings again when triggered or pregnant. Grief symptoms, in turn, began to lessen after four to six months, although they can still be present even two years after loss.
Although Farren is still analyzing the results of a larger study of over 800 women, she noted that “we were surprised by the high levels of women who met the criteria for PTSD.”
The danger of PTSD is that it can impact a person’s quality of life, relationships, ability to work, risk of suicide and physical health. It can also influence the ability to bond with future children, said Farren.
Farren additionally notes that at the later end, around 18 or more weeks, there can be a physical horror to miscarriages from the sight of blood, fetal tissue and potential bodily danger. It’s “akin to the battlefield or a road traffic accident.”
However, she said the mother’s view of the pregnancy plays a large role as well. “There’s nothing to suggest that [the mothers] wouldn’t find [an early loss] as traumatic as a later loss.”
Geller agrees, seeing in her research that “even the length of gestation didn’t really seem to matter. It’s how the woman perceives her pregnancy.”
One problem Geller sees in the conversation around miscarriages is that “people don’t equate early pregnancy loss as being the same as other types of deaths that people will experience in their lives.” Or, people receiving the news may not know what to say, sometimes inadvertently hurting their friends more with their words or actions. Instead, Geller suggests simply acknowledging that the loss is real and legitimate, and taking cues from the bereaved as to how to help.
Myth #4: There’s nothing doctors can do to lessen the pain
Williams suggests that part of the reason may be the curse of knowledge.
“After medical training, it is sometimes difficult to remember what you didn’t know,” he said. “Because miscarriage is such a common condition, and medical professionals know that the common causes were beyond the patients’ controls, those taking care of patients may not realize how rare patients think the condition is, and how they are probably blaming themselves for what happened.”
Additionally, others studying the issue believe that institutional frameworks contribute to the problem.
As it currently stands in the United Kingdom, miscarriage patients’ follow-up care consists of a single clinical check-up two weeks after miscarriage to ensure the fetal tissue has fully passed, said Farren. However, this appointment does not address the mental health of patients, she believes, just their physical health.
Farren hopes that with her research, the British medical system will acknowledge the emotional turmoil patients can experience and begin offering the same counselling and mental health care to early pregnancy loss patients that is offered to parents of stillborn children.
“What’s totally ridiculous in [the United Kingdom] is the absolute cut off at 20 weeks. When you’re at 20 weeks, you get one-to-one care and all the added sensitivity,” she said. Farren postulated that there is no difference between a 20-week stillbirth and a 19-week and 6-day miscarriage, aside from the care the parents receive. Instead, miscarriage “seems to be brushed under the carpet as something not needing any follow-up.”
Similarly, Geller worries that in the United States, even if a doctor wanted to address a patient’s emotional concerns, “physicians are really pressed for time. If this is an office visit, they don’t always have the opportunity to spend as much time with any particular patient as they might like.”
To that end, Williams suggests that providing a medical explanation for the miscarriage may go far in making patients feel better.
“Most professional guidelines recommend against [testing the first and second fetuses for chromosomal abnormalities] because of the cost of the testing. I personally think that testing is worthwhile because it can provide closure to the woman and couple,” he said, a claim supported by the studies in Geller’s review of patient satisfaction with pregnancy loss aftercare.
In her review of the available research, Geller found three interventions essential to ideal miscarriage aftercare: information about the grieving process, laboratory tests to determine the potential cause for the miscarriage, and seeing the baby after its death.
Myth #5: No one wants to hear or talk about miscarriage
“There’s a societal expectation that you don’t talk about it,” said Farren, and so “that has implications for being able to deal with it.”
But, contrary to that societal expectation, there is a desire to talk and connect with others about the issue.
According to the study on misconceptions, 46 percent of the respondents who had experienced miscarriages felt less isolated after learning of their friends’ miscarriages. Even hearing of a celebrity’s miscarriage lessened the loneliness for 28 percent of the people.
Others who have miscarried have turned to online message boards for information and community. In a 2014 survey of over 1,000 self-selected message board frequenters, three out of four forum users said the message boards helped them feel less alone. The survey, published in Expert Review of Obstetrics & Gynecology, found that the individuals valued the convenience of the sites, the anonymity they offered, and the availability of information on coping. 82 percent said they had learned new medical information from the forums, and just over half of the survey respondents said they posted at least once a week. With that in mind, 89 percent of the respondents also felt that a professional health worker should monitor the boards.
All told, these myths demonstrate a real need and desire to talk about early pregnancy loss.
And that has slowly been happening. According to Geller, the past 30 years has seen a rise in research on the psychological distress caused by miscarriages, subsequently drawing attention to the issue.
More recently, Williams said that his misconceptions study prompted a large and public national discussion. To that end, “I hope it continues so that those who have had a miscarriage don’t feel so isolated and alone, and are able to not blame themselves for the loss.”