Health

We Need to Talk About What Miscarriage Is *Actually* Like

Women deserve better information so they can prepare themselves for the pain

Warning: This story contains graphic descriptions of miscarriage and may be triggering, especially for people who have experienced pregnancy loss.

I lay on the exam-room table and braced myself for the next wave of abdominal pain. As each one washed over me, the pain intensified until I had to roll over and throw up into a garbage can. With a toddler at home, I recognized this as labour pain. But I was only 13 weeks into my pregnancy, and it was obvious that I had lost the baby.

The bleeding had started a few days earlier, so lightly that I wasn’t worried at first. We’d already heard the baby’s heartbeat at the ultrasound, and I had an appointment to see my doctor a few days later for a regular prenatal checkup. But the bleeding increased over the weekend, and the cramps started Sunday evening.

By Monday, I was on that exam-room table at my doctor’s office and then at the ER awaiting…I wasn’t sure what. Possibly an ultrasound? And referral for follow-up care, I guessed? Hopefully a change of pants, as the pad I’d put on before leaving the house had long since stopped protecting my clothes from the blood that was oozing down my thighs and up my back. But sitting in a wheelchair in the emergency room, I had no idea why I’d experienced labour pains or what else might happen.

As many as a quarter of pregnancies end in miscarriage, which is defined as a pregnancy loss in the first 20 weeks of gestation. Even so, enough stigma remains that losing a pregnancy is seen as something to be kept within a family or close circle of friends; it’s why most women don’t announce they’re expecting until they hit 12 weeks, when the risk drops substantially. And when miscarriage does happen, we certainly don’t discuss the gory details of such a private horror show. It all adds up to an incredibly isolating experience.

While I knew several women who’d had at least one early pregnancy loss (the more common kind of miscarriage, which happens in the first 13 weeks), we’d never discussed what exactly that entailed. And even though reputable websites describe bleeding and cramps, nothing fully captures what I endured. That lack of information left me unable to properly advocate for myself once I hit the ER, where I would have pushed harder for a bed or at least somewhere private to experience my loss.

Losing a pregnancy is hard enough without also being expected to prepare for some of the physical impacts. And the situation isn’t helped by overworked emergency room staff who are already swamped with other urgent-care issues. These concerns are something Michelle La Fontaine has heard time and time again. As program manager for the Pregnancy and Infant Loss (PAIL) Network at Sunnybrook Health Sciences Centre in Toronto, she oversees family support and health-care-provider education.

“The emergency departments are not set up or equipped to manage these types of experiences,” La Fontaine tells FLARE. “Even other health-care professionals will tell you that’s the last place you want to be, and yet that’s the only place you can go.”

In my case, going to my family doctor first just wasted time I could have spent being processed at the emergency room. Had I known what it would be like, I would have gone to the ER much sooner.

Read this next: Millennials Open up About Infertility: “I Had Seven Miscarriages in Two Years”

The hospital staff triaged and registered me quickly, promising I was at the top of the list for a bed in the gynaecological-care unit. But two hours later, I was still waiting, afraid to shift in the wheelchair because every small movement meant more blood soaking through my clothes. My husband asked the nurses for some pyjama pants and somewhere to change, and they had someone wheel me to the public bathroom just off the waiting room.

I started to take off my pants and discovered a puddle of blood that immediately spilled onto the floor, splashing my boots. I could feel something odd between my legs so I looked down and was devastated to find my fetus hanging from my body.

I knew I still had a chance to keep it together. I could take some deep breaths and power through calmly. I could do it without shedding tears, without getting hysterical. Instead, I leaned my forehead against the stall door and started sobbing—wild, piercing wails that must have freaked out the other people in the packed waiting room.

I was frozen, squatting in the stall, wanting to sit on the toilet but not wanting my baby to fall in. Instead, it fell to the floor. At some point someone handed me some cloths to clean myself up, and I gingerly folded the fetus into a J-cloth and held it in the palm of my right hand. I had no desire to study it, but I was distraught at the idea of it lying on the floor of a public bathroom, a surface so dirty I would have refused to put down my purse.

The hospital’s obstetrician that night told me that while labour pains aren’t uncommon, even in earlier miscarriages, the pain and bleeding generally increase in proportion to the amount of tissue you have to pass. (Although women also report that kind of pain after taking the medication that’s used to complete a miscarriage by getting rid of any remaining tissue.) It usually takes until 11 to 12 weeks of pregnancy before a woman could actually recognize a fetus if she miscarries. But pregnancy loss at 12 or 13 weeks is rare (less than 1% by the 13th week, according to the MotHERS Program at Kingston General Hospital). Overall, it’s hard to estimate how many women could have the kind of extreme experience I had, which makes it harder to prepare people for what to expect.

Read this next: “Why I Chose to Become a Single Mom at 27”

Dr. Leslie Po, an ob-gyn at Sunnybrook, says there’s a spectrum of miscarriage symptoms, and they simply aren’t predictable. “The majority of patients will present with bleeding first,” she says. “The pain usually comes afterward.” Other women have no symptoms at first, and they find out on an ultrasound that they’ve lost the baby, Po explains.

“I think it’s very appropriate to let patients know that even if they have a small amount of bleeding, if it starts to worsen, if they start getting more pain, just go to the emergency department,” she says. “Don’t wait for your family doctor.”

But as La Fontaine notes, the emergency room isn’t well equipped to deal with the emotional fallout from a lost pregnancy. While miscarriages are common, they still only account for about 2% of the patients seen in the ER every day.

“It’s not something that they see often enough to warrant any kind of additional training,” says La Fontaine. “We have a long way to go in terms of educating health-care professionals.”

In emergency rooms, patient triage is based on urgency. A woman in the midst of losing a pregnancy is simply waiting for an ultrasound and blood work. There’s nothing a hospital can do once a miscarriage starts, so she falls down the list of priorities. (That said, if you have Rh-negative blood, you might need an injection to protect future pregnancies.)

As horrifying as my experience was, the nurses and doctors gave me uniformly compassionate care and understanding. Unfortunately, PAIL has found that that’s not the case for many women. Many families who lose a pregnancy in the first trimester feel their care providers don’t understand the depth of that loss.

“There’s a real lack of understanding in our society about the psychological impact of first-trimester loss,” says La Fontaine. “Families who are six, seven weeks pregnant are already attached to this baby; they’ve already started to imagine their lives with this baby.”

There is hope ahead for better care, particularly for those in urban areas with bigger hospitals. Some provinces are looking at setting up early-pregnancy-loss clinics, to which women would be referred from the emergency room so they don’t have to wait in a place that isn’t set up to serve them.

For its part, PAIL has helped develop care standards with Health Quality Ontario that could be released as early as March. They aren’t mandatory, but they would give care providers a sense of what patients need when they lose a pregnancy. (A draft is available on Health Quality Ontario’s website.)

But Ontario is the only province or territory to financially back a program like PAIL, La Fontaine says. The other programs offering peer support and education are non-profits.

Read this next: Why Is There Hardly Any Support for Moms After a Miscarriage?

For the first few days after the miscarriage, I would alternate between tears and normalcy—or, at least, a brain distracted from anguish by Netflix baking shows. Not pregnant, after all, was normal. Not pregnant shouldn’t have felt so empty.

Sleep was harder to find than distraction. I would go to bed tired, but my mind would walk back through the most painful moments: flashes of blood, the sensation of a tiny weight in my right hand, a folded-over blue J Cloth. The jumbled memories eventually became a movie that would play in my head, disassociating me from the experience. Oh, how terrible for that woman. What a horrible thing she went through.

I sometimes found myself trying to solve the mystery of the miscarriage. Did I get listeria from the ham and gruyère croissant I’d unthinkingly had in Montreal two weekends prior? Had I been miscalculating the amount of caffeine I was drinking? What about that yoga class that had been hotter than I expected?

As much as I tried to get back to normal, my body insisted on reminding me of what I should have had. I didn’t fit most of my clothes, stuck between my usual weight and the now-departed baby bump. My hormone-fuelled acne remained. When I tried to go running to clear my head, I peed myself. And unlike the last time I’d ruined my bladder control, there was no bouncing baby at home as a reward.

All of these things feel like problems we shouldn’t consign to quiet conversations or anonymous discussion boards. Both Po and La Fontaine emphasize the need to talk more about pregnancy loss—for both partners, not just the one who carried the pregnancy.

In my case, I took a few days, talked to my husband and then posted on a private social-media account so I could limit who knew about our experience. It was the best decision: Other women shared their stories with me, friends filled our fridge so we didn’t have to worry about groceries or cooking and I knew I had a dozen people I could call on day or night when I needed help with my sadness. That last part was vital as I tried to give my husband time to deal with his grief instead of devoting all his energy to helping me with mine.

Now, a few months after my miscarriage, life is mostly back to normal. I can carry on without those searing moments blazing their way back into my brain. Mostly, they’re locked away in the back of my mind, some kind of vague shadow behind a tiny frosted glass door. Sometimes I crack it open a millimetre, the shadows become full memories and I grieve all over again.

For that reason alone, it might seem strange that I chose to write about my experience. The truth is that writing helps me process. It also starts the kinds of conversations that make other women more aware and better prepared if they do face a miscarriage. While the physical experience varies a great deal, it is simply unacceptable that sites discussing early pregnancy loss don’t make information about what can happen—like what happened to me—available. It leaves us in the dark about a very common life event, relying on other women to warn us, even though we’re encouraged to keep miscarriage private. Losing a pregnancy is a devastating experience. Women deserve better information so they can prepare themselves for the pain.

For resources in provinces across Canada, visit PAIL.