The first time Tonya Dickey had a miscarriage, she and her husband chalked it up to bad luck. The couple already had a daughter, now 6, and Dickey, a 38-year-old speech pathologist near Dallas, Texas, knew that these things could happen due to chromosomal abnormalities. Sadly, it seemed to have happened to her.
The second time Dickey had a miscarriage, one year later in August 2018, she and her husband weren’t satisfied with a lightning-striking-twice explanation. Fortunately, they didn’t have to be since, unlike the first time, when she experienced her miscarriage at home, Dickey and her medical team anticipated the pregnancy loss and, after it occurred, removed the tissue surgically. They then sent it off for testing, and about three weeks later, the results came back: The tissue was genetically normal.
“It gave us a little bit of hope because we both felt like, ‘OK, we can’t fix chromosomes or genetics, but we can fix it if there’s a physical piece, a hormonal piece, a thyroid issue or something else,” Dickey says. “That pushed us to go see a specialist.”
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Early pregnancy loss can raise a lot of questions in women’s minds, not the least of which is, “Why?” “The majority of people will say, ‘What did I do?’ says Dr. Catherine Birndorf, a psychiatrist who co-founded and serves as the medical director of the Motherhood Center of New York, a Manhattan practice that offers mental health and other services to support new and expectant moms.
And yet, many never narrow down what the answer might be — or at least don’t do so quickly — in part because professional guidelines like those from the American College of Obstetricians and Gynecologists recommend against medical workups after a first miscarriage in most cases. As a result, most doctors don’t offer such testing and insurance companies typically don’t cover it.
The reasons for such guidelines are logical: As many as 1 in 4 pregnancies result in miscarriage, and most that occur before 10 weeks are due to chromosomal errors, reports an American Society for Reproductive Medicine committee opinion from 2012, the most recent paper of its type. And so, that’s assumed to be the case unless there’s a reason — like another miscarriage or difficulty getting pregnant — to suspect something else might be at play.
“Until you have a recurrent miscarriage, they don’t always check because it’s assumed that ‘it wasn’t meant to be;’ it was some kind of genetic abnormality that wasn’t compatible with viability,” says Birndorf, also an associate professor of psychiatry and obstetrics and gynecology at the New York-Presbyterian Hospital Weill Cornell Medical Center.
Plus, testing can be practically burdensome, if not impossible. Karyotyping, the long-time “gold standard” test, involves growing cells from the tissue in a lab and staining them to see if the right or wrong number of chromosomes are present, explains Dr. S. Zev Williams, chief of the division of reproductive endocrinology and infertility at Columbia University Medical Center in New York. “That takes weeks to complete, requires significant hands-on time from technicians and requires living cells,” he explains. In Dickey’s first case, those cells were literally flushed down the toilet. Karyotyping is also “known to be prone to technical failure,” one research paper reported.
And, while another method called microarray testing doesn’t require live cells since it is DNA-based, it can cost upwards of $2,000, Williams says.
Importantly, too, testing after a miscarriage far from guarantees an answer. Current tests merely rule in or out — with a decent margin of error — genetic abnormalities. If they’re ruled out, the cause could be any number of issues — an inherited blood clotting condition, metabolic or hormonal issues like diabetes or thyroid dysfunction, an infection — many of which have relatively weak support as causes of miscarriage anyway.
In other words, even when women do undergo testing after a first miscarriage — in some cases, doctors will offer it or honor a patient request — they’re often still left without answers. That’s even the case after multiple miscarriages: The American Society for Reproductive Medicine reports that as many as 50 percent of couples who’ve experienced two or more pregnancy losses never determine a cause.
For Elise, a 30-year-old public relations professional in San Francisco who asked that her last name not be used to protect her privacy, an autopsy of the fetus after her pregnancy loss at 19 weeks revealed little. “What I always got (when I asked about the results) was, ‘Sometimes, we just don’t know’ and ‘things happen,'” Elise recalls. “I was frustrated with that because when you’re talking about an autopsy, that’s a scientific approach. What happened? What might have caused it?”
It wasn’t until she saw another doctor about five months later for her first prenatal visit for her second pregnancy, which also turned out to be nonviable, that she learned the first loss may have been due to an infection, but nothing more specific than that. All she learned from testing after her second pregnancy loss was that it wasn’t due to a genetic abnormality. What it was due to is anyone’s guess. Those unsatisfying, incomplete answers make it hard for Elise, who’s now pregnant for the third time, not to blame herself.
“I’ve experienced a lot of loss in my personal life,” says Elise, including both parents and an aunt. “(Losing a pregnancy) is a totally different experience, and knowing that you made this tissue and that you couldn’t bring it to life — I felt like I was solely responsible for the demise. It made me feel like, ‘What did I do wrong? How could I have changed it?'”
[See: Being Childless Is Painful for Many Women, Here are 9 Coping Strategies.]
Reflections like Elise’s are common. “Oftentimes, my patients never have an answer, and that’s what suspends their grief,” says Jessica Zucker, a clinical psychologist in Los Angeles who specializes in women’s reproductive and maternal health and started the Instagram account @IHadaMiscarriage, which features women’s experiences in their own words. “Having a mystery that goes on and on while attempting to try again is incredibly psychologically traumatizing itself.”
In fact, research suggests as many as 20 percent of women have symptoms of depression, anxiety or both after a miscarriage; most of them suffer for one to three years. “Some people are like, ‘OK, next!'” Birndorf finds, “and other people become depressed.”
Avoiding or limiting self-blame isn’t the only reason some professionals and women are pushing for better or swifter testing. Ideally, identifying causes leads to solutions, which prevent miscarriages, reasons Williams, who’s developed testing technology that’s in the approval process and aims to bring women — even those who’ve “only” had a single miscarriage — answers in hours, not weeks, and for a fraction of the cost. In his view, why wait until the second consecutive miscarriage before beginning to explore potential causes?
“There are a lot of fixable causes for this,” he says, like insulin levels, anatomical issues and hormonal imbalances. “It’s not something that the woman is doing, but there are medical things that we can be doing in terms of diagnosing and preventing early pregnancy losses.” The American College of Obstetricians and Gynecologist’s latest practice bulletin on pregnancy loss, however, states that “there are no effective interventions to prevent early pregnancy loss.”
[See: Why Can’t I Get Pregnant?]
For Dickey, the speech pathologist in Texas, there did seem to be a clear cause — and potential solution. Screening tests revealed fibroids in and on her uterus, one of which was likely preventing pregnancy tissue from growing. Just last week, she had surgery to remove them. Once she’s recovered, Dickey and her husband plan to try for a second child again. “I feel blessed,” she says. “We have a plan for moving forward now.”
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How Can I Find Out What Caused My Miscarriage? originally appeared on usnews.com
