Though common, miscarriage can be isolating experience

Three years ago, Ramsey Hootman’s daughter was stillborn at 26 weeks. “It was obviously the worst day of my life,” she said, “but at this point it’s not devastating – it’s mostly just part of my history. I want to be able to just bring it up like anything else, to be able to talk about my daughter just like my other kids, but every time it comes up it’s an instant conversation-stopper. I basically feel like I’ve ruined everyone else’s day.”

Hootman is not alone. Sure, the range of emotional responses to miscarriage and child loss is vast. But despite the fact the Centers for Disease Control and Prevention estimates there are more than 1 million fetal losses (“the intrauterine death of a fetus at any gestational age”) each year, we just don’t have a script for dealing with this kind of bereavement.

“There’s no open conversation about miscarriage,” laments Christiane Manzella, clinical director of the Seleni Institute in New York. “There is no one way that women respond, and there are no ways that we really support women and their partners through miscarriage.” Manzella attributes this in part to our “death-denying society – we don’t even say the word ‘death,’ we say ‘fetal demise.’ ”

Although 1 in 5 pregnancies will result in miscarriage, it can be an isolating experience since talking about it makes many people so uncomfortable. October is Pregnancy and Infant Loss Awareness Month to acknowledge that it happens much more commonly than many are aware due to the difficulty talking about it. On Oct. 15 each year, Pregnancy and Infant Loss Remembrance Day is honored with the Wave of Light, when at 7 p.m. in all time zones families around the world are encouraged to light candles in memory of the babies who were lost during pregnancy or in infancy. Images of lit candles spread across social media last week as families acknowledged their loss while showing others they are not alone.

When Christa Terry, co-founder of Hello Mamas, became pregnant with triplets in 2010, she panicked. She lost one of the babies early on, but came to terms with what life with a toddler and twins would look like in a small house on one income (since child care for three kids would be too expensive to justify her returning to work). Then she learned in the second trimester the babies had no heartbeat, and she felt like the rug had been pulled out from under her. She shared the news immediately on her blog and on Facebook, “and people fairly quickly started reaching out to me with their own stories,” she said. “So I didn’t have that period of feeling alone because people were so open with me at that point. I can’t imagine what it would have been like to experience that in a vacuum with me and my partner.”

Although six years have passed and she has another healthy son, she still thinks about what her life would have been like with twins and feels sad, “and that part is kind of lonely. ... I’ve always kept [that] private because that kind of thing makes people really uncomfortable.” Similarly, when people ask about her visible tattoo, which is a Roman numeral three to memorialize her triplets, they don’t know how to respond.

Krista Gervon, who miscarried at seven weeks, was open about her experience and also was surprised by how many women began to tell her about their own miscarriages. She now is co-producing a documentary, “Don’t Talk About the Baby,” with filmmaker Ann Zamudio, on the subject.

“We want to break the stigma and silence around infertility and pregnancy loss,” Gervon said. “We want it to be something that people can talk about openly and not feel like it’s something to be ashamed of or embarrassed by or that it is something that is wrong with them.”

Through interviews with women and experts across the country, the film, which is in postproduction, will explore the effect of infant loss and infertility and why we are so uncomfortable talking about those subjects. “A lot of a woman’s identity is held in her motherhood and in becoming a mother,” Gervon said. “So if a woman cannot become a mother or for some reason can’t carry a child, it’s like it’s something to be ashamed of.”

Every woman who miscarries has a list of trite phrases not to say to someone going through it. “My friends and family tried their best to comfort me and my husband,” Radigan said, “but I don’t think you really understand the pain until you go through it. Before I had my miscarriages I had friends who had miscarried, and I know I said things that later bothered me.”

Women interviewed for this article suggest refraining from the following consolations: Everything happens for a reason. It’s all part of God’s plan. At least you know you can have kids. At least you weren’t that far along. You’ll get pregnant again.

Gervon appreciated sentiments like “I’m so sorry for your loss” and “I can’t imagine what you must be going through.” Cards and flowers were nice. “For me the most important thing was to know that people were thinking about you ... and just letting people heal on their own time at their own pace, not expecting them to get over things. ... Just being an ear, someone to be able to listen to whatever you have to say, even if you don’t know what to say.”

So what needs to change? For Terry, both her first premature daughter and later her miscarriage were total surprises. “It doesn’t come up in your prenatal appointments because they don’t want to scare anybody,” she said. But “that’s a huge part of why people, myself included, feel so isolated and it happens to you and then suddenly everybody told me their stories ... and I’m like how did I not know this?”

Manzella argues the key to reducing the stigma of miscarriage is “to normalize the process while also not minimizing the stress. ... If in normalizing it we minimize the emotional response, we’d be doing it a disservice. It’s part of the reproductive story, it’s not a rare event ... and the emotional and physical distress that can occur is also a normal part of the reproductive experience. That’s really the ground of creating change.”

To do this, Manzella suggests incorporating information about miscarriage, stillbirth, infertility and so on into the conversation well before a woman gets pregnant. If we learn about these things at the same time we learn about the mechanics of human reproduction – along with facts about their prevalence and that most often they have nothing to do with maternal age or habits – then perhaps we can erase some of the fear, shame and discomfort around infant loss.

In the meantime, one of the most straightforward changes we can make is simply to talk about it. “Many women still wait to announce a pregnancy for fear of miscarriage, which is certainly their choice,” Hootman said. “But at the same time, it kind of reinforces that Facebook effect where you assume everyone’s life is better than your own because everyone just posts good things. Keeping miscarriage and pregnancy loss private gives the impression that it’s rare and terrible, when in fact it’s as common as dirt. Creating life is an incredibly complex process, and it can and does go wrong in so many ways. There’s no reason to hide that truth. To me, it only makes every live birth that much more miraculous and precious.”

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