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Finding the Right Words After Infant Death and Pregnancy Loss

by Sarah Stankorb

October 1, 2015

Jessica Zucker is a therapist who specializes in women’s reproductive health. This means she’s counseled women struggling with infertility while she herself was pregnant; she helped women work through miscarriage as she transitioned between her own first and second trimester. “Philosophically, theoretically, emotionally, I guess on some level, I was quite attuned to their experience of loss and grief … but had yet to experience a loss in a corporeal sense, in a bodily sense myself, until my 16th week miscarriage.”

Three years ago, Zucker had been home, sweaty, spotting blood, cramping, alone. Her doctor told her to just continue her day as normal, and Zucker thought if she could empty her bladder, breathe, everything would be okay. There was a pop (maybe that’s a trick of memory), but her baby slid out, centimeters above the toilet bowl water. Zucker bled. She texted her family, friends, “I HAD A MISCARRIAGE.” She cut the umbilical cord. She was in shock. Her doctor told her to place the baby in a plastic bag and come into the office. Once there, she had an unmediated D&C.

Her trauma was in some ways unusual (many miscarriages happen early, most women don’t deliver so prematurely and on their own). But miscarriage is incredibly common. (According to the March of Dimes, about 15 percent of known pregnancies end in miscarriage.) Yet its reality—and its grief—is often locked away. Women often feel ashamed, as if their bodies have failed them. Almost half of people who have experienced a miscarriage or whose partner had one feel guilty. It’s an out-of-order (child first) loss, and in the face of that, otherwise supportive loved ones can balk. Withdraw. What can you say?

Dr. Jessica Zucker. Photo by Bonnie Tsang

If acknowledged by anyone other than the grieving parents, miscarriage is often treated with tropes like “your angel was too good for this world,” “everything happens for a reason,” or reassurances like “at least you know you can get pregnant.” Words intending to express care can come off as minimizing. Now Zucker is trying to change that.

Today, in boutiques in Los Angeles and at her online shop, Zucker is launching a new line of empathy cards designed to stamp out the impulse to say nothing, to fight the miscarriage taboo. Her goal is simple: “that people can no longer say ‘I didn’t know what to say’.”

Some of Zucker’s cards come with an edge: there’s a #FuckLoss card. There’s a card for women who get pregnant after miscarriage that acknowledges the terrifying anxiety of creating life again after loss. And there’s an “I’m sorry I’ve been M.I.A., I didn’t know what to say” card. There are also ten-packs of stillbirth and baby loss announcements, a sign that late-term and newborn babies were here, were real, were loved.

Zucker wants to help people find the language for our most incomprehensible loss. To her, “having words for that is part of public health.”

There’s a “lack of clear and defined etiquette,” says Tara Shafer, co-founder of Reconceiving Loss, a resource center with a rich online support community for those grieving miscarriage, stillbirth and infant loss. “People don’t know what to do. They feel like anything that they do might be an invasion of privacy, or they’re not certain it’s appropriate.”

Without being offered space to discuss the loss, grieving people become more isolated. Receiving cards or being invited into a support group, notes Shafer, can open communication, and the chance to talk can stave off anxiety, PTSD symptoms and strains on grieving partners’ relationships.

“People looking for a card are often defeated by what to send,” says Shafer. “[They] don't say anything even though they would like to."

Finding the right words for unspeakable moments has been a mission for Zucker since her tragic, traumatic loss. She knew people might distance themselves—one pregnant friend did. (Miscarriage isn’t contagious, Zucker notes without malice.) Zucker knew what the grief process would look like, how “the isolation can be so awful and piercing.” Two years after her loss, she launched a hashtag campaign with a New York Times Motherlode piece, and #IHadAMiscarriage became a way for women to break their silence. It was an effort at destigmatizing loss.

The greeting cards are launching at a time when the public is beginning to open up about miscarriage. Mark Zuckerberg’s viral post earlier this summer detailed how he and his wife, Priscilla Chan, had struggled through three miscarriages, and shared the news with the hope of helping more people feel comfortable telling their stories and feel less alone. And since 2006, October 15 has been recognized in the U.S. and Canada as Infant and Pregnancy Loss Awareness Day.

Yet miscarriage remains one of few remaining medical taboos.

Ours is culture in which positivity and good news are applauded, says Zucker. “I think it’s hard to stay with grief and not try to make it better. I think the taboo comes from this idea that we’re supposed to be happy, and we’re supposed to focus on good things.” That, to her, is a part of why women keep quiet about their losses. The self-blame, the guilt, the awkwardness of broaching the topic of grief, can also cause women to turn their pain inward. Some women distance themselves. That silence breeds isolation, creates shame.

Even in her own life, Zucker saw her “mom friends”—the fellow mothers at her son’s preschool—sort of step back. “I just felt this sense that people thought something was wrong with me, or that they didn’t want to be around something that was so devastating and uncomfortable.”

Alas, Zucker adds, miscarriage isn’t a disease. It’s an organic part of family building. It’s heart-breaking and messy. Yet, she adds, “if we endeavor to create life, we’re inevitably going to face the potentiality of death.”

The reality of miscarriage is what Zucker is hoping to make plain with her cards. Expressions of empathy—not just sympathy—but real, felt acknowledgements are a way to help women recover.

Empathy card images courtesy of Jessica Zucker, lettering by Anne Robin Calligraphy

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Finding the Right Words After Infant Death and Pregnancy Loss