Four years ago, Ann Zamudio was 7 weeks pregnant with her first child when she developed two subchorionic hematomas. In simpler terms, she was experiencing bleeding between the chorion (the membrane surrounding the embryo) and the wall of her uterus. Though this condition doesn’t normally result in miscarriage, in Ann’s case, it did. “Nothing about this was expected,” says Ann, an independent filmmaker. “It was my first pregnancy. I didn’t know much about miscarriage. I was completely blown away that it had happened to me.”
Ann says that, unlike many other women she encountered, she was “very open about my experience from the get-go.” In her article “Why Don’t People Talk About Miscarriage?” Ann writes, “After my dilation and curettage (D&C), I didn’t hear [the word miscarriage] anymore… I got many looks of sympathy, quickly administered hugs, and flowers from my mother-in-law. No one said it outright, but the message was clear: it was time to suck it up and put ‘this business’ behind us.”
Friends and family who did broach the topic weren’t much more help, she adds. Despite their sincerity, they had little to offer beyond well-meaning sound bites, like “There was something wrong with the baby.” For Ann, that simply wasn’t true. Her baby had been fine—it was her uterus that had failed her. But even if those words had been accurate, they would have hurt just as much. “People don’t mean to be hurtful,” asserts Ann. “That’s why I think we need education about this in our culture.”
Talking about pregnancy loss, she believes, is a way women can find their way through grief to a new normal. It is also the way they can help dispel some of the long-held myths and misconceptions that swirl around the subject. The key, she says, is helping all of us better understand how (and why) we should share our stories…and how to listen.
The Secrets That We Keep
Miscarriage, infertility, and post-partum depression are just a few of the subjects that women tend to keep to themselves. Why don’t we share our stories—and open ourselves up to the support of family and friends? This keep-quiet and get-on-with-it approach seems to be a cultural trend that dates back decades, says Kathy Donaldson, MSN, who is certified in perinatal loss care by a national agency and coordinates perinatal grief support services for Capital Health.
She illustrates the point with a story of a knitting circle of mostly senior citizens she visited several years ago. These women had gathered at Donaldson’s church to knit and crochet blankets and hats for babies who were lost later in gestation. She paid them a visit to explain the services that Capital Health offers couples who have lost a baby. “What started around the table was a discussion about their own losses that had happened when they were in their twenties,” she explains. “They said, ‘I was never able to talk about it before. I was expected to move on and get pregnant again. I never had a chance to grieve my miscarriages.’ It was great that I could open the door to that discussion.”
The problem with not mourning our losses, says Donaldson, is that the pain never goes away. “These women never forgot about it. They never grieved,” she says. “So it just kind of lingered.”
Another danger of keeping quiet? “You run the risk of blaming yourself. What did I do? Is this my fault?” says Kira L. Przybylko, M.D., an obstetrician at Lawrence OB/Gyn Associates who is on the medical staff at Capital Health. “When you talk about it and learn that friends had miscarriages—and none of you did anything wrong—you realize it’s just a fact of embryonic development,” she says. “I think it helps take away that feeling of guilt.”
When women return for their follow-up visit, she says, they tell her they were shocked to learn how many loved ones have also experienced pregnancy loss. “People don’t realize how common miscarriage is.”
Misconceptions about Miscarriage
In June, the journal Obstetrics & Gynecology published the results of a survey of more than 1,000 adults regarding the subject of miscarriage. Their answers revealed what obstetricians have long known—misunderstandings about early pregnancy loss are the norm, not the exception. Two of the most distressing erroneous beliefs centered on the frequency of miscarriage and the factors that can cause it.
First, more than half of the respondents believed that miscarriages were rare, happening in less than 5 percent of pregnancies. In reality, the figure is at least twice that, with miscarriages occurring in up to 1 in 4 pregnancies. The rate increases as we age, with women over 45 having a risk of about 50 percent. Second, a majority of respondents thought that miscarriages could be caused by things like stress, heavy lifting, and a bad scare. The truth: None of these can trigger a miscarriage—and the vast majority of pregnancies that end do so because of a genetic or medical problem with the embryo.
Misperceptions like these help perpetuate the stigma associated with miscarriage and discourage women from seeking support. This is particularly heartbreaking considering that talking about miscarriage with our closest loved ones can be tremendously healing, says Capital Health’s Meghan A. Patel, M.D., who is part of the Center for Women’s Health OB/Gyn group. “I encourage women to talk for two reasons,” she says. “Number one, for their own support, and number two, because it creates a conversation that a group of people can benefit from.” Often, when a woman shares her story, others open up, too.
The effects don’t stop there, however. After sharing her own story, Ann says, “I became the person in my social circle to talk to about pregnancy loss.” It is a phenomenon she has heard recounted by many other women. “It’s a ripple effect,” she says.
Talking about miscarriage and other formerly taboo subjects is also a trend that seems to be gaining traction thanks, in part, to an upswing in celebrity reveals of personal struggles. Last August, for instance, Facebook CEO Mark Zuckerberg and his wife, Priscilla Chan, divulged that they had experienced three miscarriages before the recent birth of their daughter, Max. With such revelations come widespread healing, say experts. In the aforementioned survey, 28 percent of respondents who had miscarried reported feeling less alone after hearing celebs’ stories. However, friends’ disclosures meant even more, with nearly half of the women saying that the conversation helped dispel feelings of isolation.
If you choose to share your story of loss, Dr. Przybylko recommends doing so in the same way you would share any sad news. Find a place where you’re comfortable and have privacy. You may also want to limit your discussion—at least at first—to a very close-knit circle of people, such as your immediate family and your best friend.
Dr. Przybylko’s personal experience gives her valuable insight. “I have two kids [now ages 17 and 14], and I had a miscarriage between them, and an ectopic pregnancy afterward,” she says. Talking to her mother—who’d had several miscarriages and lost a full-term baby between Dr. Przybylko and her brother—was incredibly helpful. “She told me it’s ok to be upset. It’s ok to cry. It’s ok to grieve,” she says. “She knew she couldn’t make it better, but she could be supportive.
Seeking Support from Professionals
It’s important to note that, while friends and family can play a key role after pregnancy loss, health care professionals offer additional benefits to grieving couples. “Capital Health’s policy is that anyone who has a pregnancy loss, regardless of the gestational age, is referred to perinatal palliative care,” says Donaldson. “We provide services, free of charge, for up to a year.” The first outreach is a letter, providing information about the support services available through Capital Health, as well as other resources including websites, support groups, and books. Additional support, typically in the form of phone conversations, is provided by 25 Capital Health volunteers, most of whom are nurses and all of whom have undergone training in assisting those who have suffered a perinatal loss.
“For many women, it’s easier to talk to somebody that they don’t know because there’s no judgment,” says Donaldson. This can be particularly true for women whose friends and families are telling her it’s time to move on before she is ready. “About 75 percent of parents consider a miscarriage to be the death of a baby,” explains Donaldson. “Many people are not just going to ‘move on.’”
Donaldson and her team also offer insights that can be tremendously helpful in navigating the world after the loss. For example, she warns couples that, when they first step outside the home, they will be more aware of babies and small children. “Those children have always been there, but now you will notice them everywhere you go,” she says. This awareness can prepare couples so they aren’t shocked when it occurs.
Grief support specialists are also trained to recognize the signs of depression. “A large majority of women don’t get to that point,” says Donaldson. Still, many women wonder whether they’ll ever feel normal again. “I tell them, ‘You’ll have a new normal. You’re not the same person you were, but you’ll be able to do all the things you enjoyed before, and you won’t think about this all the time. But you won’t be the same person you were before it happened.’”
By validating women’s feelings, grief support specialists help ease their concerns as they work through them. This, says Donaldson, is one of the most rewarding parts of her work with Capital Health. “It makes me so happy to see people move through their grief and live their lives—and to know I’ve been able to help them in that way,” she says.
Today, Dr. Przybylko juggles her medical practice with raising two teenagers, ages 14 and 17, and Ann Zamudio spends her days wrangling two lively little ones, ages 17 months and 3 years. While Ann is quick to caution that not everyone’s story ends with a baby, she believes that talking about a pregnancy loss can help women move forward, no matter what the future holds. In fact, it’s the reason she is currently producing Don’t Talk About the Baby—a documentary film that empowers women to share their stories of love and loss in their own communities and help end the “culture of secrecy” that has long surrounded women’s issues.
“I’ve tried to turn my loss into something good,” says Ann. “I think that has helped me more than anything else.” Recently, a visitor to Ann’s Facebook page for Don’t Talk About the Baby posted, “You’re taking the stigma away one story at a time.” That, she says, is something that each of us can do in our own way: By reaching out to people in our everyday lives, sharing our stories, and listening to theirs. “That’s how we’re going to turn the tide,” says Ann. “One story at a time.”
Offer Your Support
What should you say—or not—if a friend or family member opens up to you? Here, Donaldson and Drs. Patel and Przybylko offer guidance on how to be a source of support.
Don’t hijack the conversation. If you have had your own miscarriage, you can share that, but withhold details unless you’re asked. Keep it to, “I’ve gone through this, and I know how upsetting it is. If you want to ask me anything, I’m willing to share.”
Avoid platitudes. Try no to say, “It wasn’t meant to be” or “You’re lucky you have other children.”
Don’t make it a contest. “Being supportive doesn’t mean trying to decide who has the worse story,” says Dr. Patel.
Avoid medical advice.“One patient swore Spanx was the cause of the miscarriage,” says Dr. Patel. This type of statement perpetuates misconceptions. Leave medical discussions to a doctor, and focus on being an emotional support.
Don’t exclude the partner. Women often receive more support than their partners or spouses, Dr. Patel says. Just because you don’t see a man crying or talking about it, that doesn’t mean he doesn’t need to do those things, too.
Do say, “It’s not your fault.” “If a woman is going to have a miscarriage, there is no magic pill to stop that,” says Dr. Patel. The woman should not feel guilty or think that she might have been able to avert it “if only” she had done things differently.
Most of all, just listen. “When it comes to saying the right thing, often what’s more important is not saying anything at all,” says Donaldson. Just make it clear that you’re there to hear their story if they want to talk about it.