Most women get a baby at the end of pregnancy. I got a disease instead.
Miscarriage and Molar Pregnancy: My Story
A sudden wave of nausea washed over me. My stomach clenched painfully; I couldn’t catch my breath. The best way to describe the feeling? Like a punch in the gut.
My eyes darted over the words beneath the picture; I moved past the fuzzy, black and white image as quickly as possible. I focused on the phrase “strong heartbeat” and nearly dashed to the bathroom as the nausea worsened. Through the haze of sickness and disbelief I typed a congratulatory message, hiding the image the instant I hit send. Who would have thought that something as amazing — as beautiful — as an expectant mother’s first sonogram could tear through me so savagely?
I never thought I’d have trouble bringing a child into the world.
I never thought I’d be this fragile, bitter person.
Rewind: December 2013
I got my first positive pregnancy test on December 7th, 2013.
I was on day ten of my two-week wait (the time between ovulation and when you’re supposed to start your period), normally too early to see any definitive result on a home pregnancy test. Traditional advice says it’s best to wait until after a missed period to test, but I bought some cheap dip strips on Amazon so I could test as much as I wanted (I’m not known for my patience). After an agonizing five minutes had passed, I picked up the narrow white stick and squinted: two lines. The test line was very faint but discernible, and I knew that any second line with color — no matter how light—meant I was pregnant. I took another test shortly after that; it produced an even darker test line.
There was no denying it. We were expecting our first child.
I had spent hours in the months prior thinking of creative ways to spring the news on my husband, but the excitement was too much. As soon as he woke for his night shift at work, I showed him the tests and explained what they meant.
We were overjoyed. We had only started trying three months earlier, but as anyone who has been actively trying to conceive knows, each month without a positive test is a disappointment. The timing was perfect: I had recently turned in my notice at work so I’d be finishing up my last day before any serious morning sickness hit and, in eleven days, we were leaving for an extended vacation back home where we could tell all of our family.
Things went along without many hiccups over the next few days. I continued to test, burning through the backlog of strips to check for a consistently darkening test line (that shows progression, a sign of a healthy pregnancy). While the results weren’t quite what I was expecting, the lines did get a bit darker. I chalked it up to having tested so early and tried to forget about it.
The Beginning of the End
The morning of December 17th, I had some light spotting. I had done my research and knew that about 50% of women with healthy pregnancies experienced some bleeding, so I tried not to worry and gave my doctor a call. She advised me to take a trip to the E.R.
I called my husband and he drug himself out of bed to come pick me up from work. Some of my coworkers were reassuring me while I was waiting for my husband to arrive. I was convinced that everything would be fine, but wanted to be checked out…just in case.
As I walked to the car, carefully placing each step on the rough red brick parking lot, I imagined laughing with my sisters-in-law a few days later while I recounted the story of our first “scare.”
Those red bricks have been permanently seared into my memory.
After a battle at the receptionist’s desk where we dealt with the language barrier (my husband and I are currently living overseas), cultural differences, and insurance woes, we were finally directed to the emergency waiting area. Time passed painfully slowly as we sat, helpless, waiting to be seen. A nurse came from the back and walked us to the gynecology department where we were directed to sit and wait again.
I can’t explain how frustrating the waiting is. Everyone around us was happy, smiling, laughing; we were anxious, concerned. Nobody treated us like our situation was an emergency. We were ushered here and there, stuck to the side to wait…and wait…and wait.
We had been at the hospital for an hour or more before we were taken back into the doctor’s office.
He was nice enough. He asked a few questions about my symptoms and the date of my last menstrual period, then explained what might be happening. He took us into the dark adjoining room where he performed an ultrasound. It wasn’t conclusive — he found a gestational sac measuring 11mm but couldn’t see anything inside it, normal at less than 5 weeks—so he sent me to the lab for bloodwork with a promise to call with the results that afternoon.
I returned to work; my husband went home and slept. With my stomach in knots, I finished my last day on the job and went about the final chores to be done before our big trip.
While I was balancing our checkbook, I received a voicemail from the gynecologists’ office. My hands were shaking as I held the phone to my ear and grabbed a pen to record the results. I can’t remember everything the doctor said. The words and phrases that stuck out—miscarrying and hCG level only 52—I can hear to this day.
It was surreal. The time between that voicemail and the actual miscarriage was hazy. I cried a little, then went on with the cleaning and preparing that had to be done before we left. Our best friends—close enough that they’ve been named family—came over to comfort us. We talked, watched a movie, laughed a little. I Googled a thousand different things. Does miscarriage hurt? Could the doctor be wrong?
I held on to hope that, somehow, he was wrong. Hope that I wouldn’t miscarry. Hope that our first child would miraculously recover and live on.
As our friends left that night, I knew the end had come.
The cramps were sudden and intense. A trip to the bathroom confirmed what I knew as soon as I felt them. I was, without a shadow of a doubt, having a miscarriage.
I was both devastated and unfeeling. I shut down emotionally to get through that night and the very long day of travel ahead, and I remained numb for days after.
Twenty-something hours passed from the time we left our house the next morning until we finally arrived “back home.” I made frequent trips to the bathroom to tidy up. Other than that, a severe headache, some dizzy spells, and moderate nausea were the only side effects I had. As we shuffled through airports, onto and off of planes, and into trolleys and cars, I wondered if miscarriage could really be this (relatively) painless.
We told the first of our family two days later. Over our month visit, we gradually filled in those closest to us and arranged for the rest to be told once we went back overseas. I expected surprise—no one even knew we had been trying—and overreactions along with plenty of tears, but everyone handled it well.
I guess they were strong because it was obvious that we were barely able to keep it together.
Nearly two weeks passed before I broke down. I could feel the tide swelling within me and went to bed early, alone. I read stories of other women’s experiences, added miscarriage quotes to a secret board on Pinterest, and sobbed. I still feel guilty that I didn’t cry more during that first month. If it mattered so much, my mind whispered, wouldn’t I have been more upset?
January 2014 and Pregnancy: Round Two
We tried our best to enjoy our time at home. We spent precious weeks with family, laughed until we hurt, ate way too much, and got to enjoy some things that we could only do in America. It was good to be home, and the distractions helped kick-start the healing process.
I hadn’t been instructed to wait before becoming pregnant again. My husband and I discussed it, both agreeing that we still wanted to try. Previously, I had been tracking my cycles and timing intercourse around ovulation for maximum chances of conception. To do that again right after the miscarriage felt wrong, as if we weren’t touched at all by the loss. We decided that we wouldn’t start using birth control but we wouldn’t actively try to conceive either. If it happened, good. If not, that was fine too.
As it turns out, it did happen...that very cycle.
January was a whirlwind. As soon as we returned from our vacation, we were busy moving to a new house. Despite all the stress and the hectic pace of those few days, I began to notice some changes in my body. Those changes felt familiar.
I woke up the morning after our first night in the new house with an odd feeling that I just couldn’t shake. I realized that my period was due at any time, but I’d had none of the usual signs that precede it. Anxious, I took one of the last two pregnancy tests that I had remaining.
Two pink lines. An undeniably positive result.
I was stunned. How in the world had I gotten pregnant again so soon? I had read some articles that suggested fertility increased after a miscarriage, but I never expected to become pregnant the first month.
At the time I didn’t see the significance, but the date of that positive test—January 17th—was one month exactly after my miscarriage.
Trouble in Paradise: February 2014
We were nervous at first. But, as the five-week mark came and went, we breathed a sign of relief. We started to relax and began making plans. We even told the closest of family and friends. I began having symptoms—a sign of a healthy pregnancy—including nausea all day long.
On the last day of week six, I woke up with familiar brown spotting.
It was a Saturday and the gynecologist’s office was closed, so we went to the E.R. After some questions and a brief exam, the E.R. doctor placed me on pelvic rest. The spotting cleared up a day later and I didn’t have any pain or cramping, so I thought it was just a fluke.
I didn’t worry a week later when I had another short episode of brown spotting. About ten days later, though, I had spotting with some small pieces of tissue.
That couldn’t be normal.
Wearily, we went back to the E.R. The doctor on rotation that night obviously didn’t want to be there. He jadedly waved us in when it was finally our turn to be seen, frowning at us as we sat at his desk. He had an air of annoyance as he asked what we presumed he should do about the situation since he was only a general practitioner.
Since I wasn’t having the telltale pain that comes with an ectopic pregnancy, he bluntly stated that he wouldn’t call an ultrasound technician in. After all, he said, the tech would have to drive fifteen minutes to get to the hospital and I could just see a specialist in the morning. After he berated my choice of seeing a gynecologist instead of a midwife, he claimed that I wasn’t a medical emergency and excused us.
We were both livid. I sincerely hope that no woman in that horrifying situation is treated half as rudely as we were that night.
Nothing changed overnight. As soon as the gynecologist’s office opened in the morning, I called and they squeezed me in that afternoon. A mix of trepidation and excitement roiled in my belly all day. If there weren’t any serious problems, I was far enough along—in my eighth week—to see the baby on ultrasound and hear a heartbeat. I did a little research, making sure I knew what a healthy baby looked like and how fast the heartbeat should be.
I wanted to be educated, to be prepared.
Nothing could have prepared me for the news we received that afternoon.
The doctor didn’t waste any time. He got the minimum amount of background information from me quickly, then took us over to the ultrasound room.
I watched the screen anxiously as he moved the probe back and forth, trying to get a clear image. I kept looking for the black circle—the gestational sac—that we had seen the last time, but my untrained eye saw nothing.
“This is not a good pregnancy,” he said in his thick Dutch accent. “There is a large clot in your uterus.”
He took a quick measurement, snapped a picture, and it was over. I dressed and we returned to his office. He explained, as best he could with his limited grasp of English, that I would need a D&C soon. The assistant came in and made my surgery appointment for that Friday, the same day that my eight-week checkup was originally scheduled.
The same day that we should have been seeing our healthy baby for the first time.
I cried a time or two, but mostly went numb again. My husband took care of nearly everything for the next few days. I couldn’t muster the energy or will to do anything but sit on the couch.
The procedure went fine. Physically, my recovery was quick; the most unpleasant thing I endured were some mild cramps and a headache. Emotionally, I don’t think I’ll ever be the same.
At my post-operative checkup two weeks later, we got another shock.
“I have to tell you a very difficult story,” my doctor began. He told us the pathology report said that my pregnancy had been a molar pregnancy, or gestational trophoblastic disease. Instead of a baby, only a tumor had been in my womb. There had been chromosomal abnormalities in the sperm or egg, causing the placenta to grow out of control. Molar pregnancy is rare, only affecting one out of 1,600 pregnant women.
I would need to have a blood test each week until my hCG returned to zero. Six months after that date, I’d be tested again to make sure the pregnancy hormone hadn’t returned. If my hCG started going up at any point, my disease would be classified as persistent and further treatment—including chemotherapy—would have to be done. In rare cases, persistent GTD develops into a form of cancer.
And, I wasn’t allowed to get pregnant until the long-term blood test came back clear.
I’m in the in-between now. My weekly blood tests have shown that my hCG is slowly declining; it started out at 160,000 in February and was recently below three hundred. My period returned. Medically, things are looking good for me thus far.
Emotionally, it’s still pretty rocky.
It’s been about a month and a half since we found out about the second loss. I have more good days than bad, but seldom an hour goes by that I don’t think about it. I’m moody, irritable. I wonder, after two consecutive losses, if I’ll ever be able to have a healthy pregnancy. If we’ll ever be able to have children of our own.
Several friends have announced their pregnancies lately. I desperately want to be happy for them, since it is a momentous and joyful event. Jealousy, resentment, and sadness dominate, soon followed by guilt. Why can’t I be experiencing what they are experiencing? Why didn’t I get to see that beautiful, normal sonogram image?
Why am I so bitter, so frail?
I don’t know if I’ll ever have an answer. I’ll never be the person I was before the losses, that is certain.
But you know what? I’m okay with that.
If You’re in the In-Between Too
For those of you reading this after your own miscarriage or molar pregnancy: It gets better.
Take the time to grieve in whatever way you need. Don’t beat yourself up if you’re not outwardly falling apart. Research what happened if information empowers you, or shut out the details if they’re not helpful. Do something that really makes you happy that doesn’t focus on getting pregnant (I finally found the courage to start taking horse riding lessons after D&C recovery). Don’t feel guilty if all you want is to get pregnant again immediately.
Talk to someone who gets it. I was so fortunate to be able to talk openly with one of my best friends about everything I was experiencing and feeling. Sometimes I didn’t want to talk to anyone, but talking to her always made me feel better. It made me feel like someone understood.
Love, support, and appreciate your spouse. In a time that feels so hopeless, it’s easy to forget about all the wonderful blessings that you do have.
Take a break from social media if you need it. I avoided Facebook, Twitter, and Instagram for a while after my losses. The sudden and unexpected pain when seeing someone else’s announcement—and hearing that their baby is due at exactly the time yours should have been—isn’t worth it. If you still find it hard to deal but want to return, temporarily unfollow the accounts that post problematic content. They’ll still be there when you can cope.
Share your story if you feel compelled. Miscarriage is kept quiet, as if it were dirty or shameful, and this sweeping under the rug forces many women to bear the burden alone. Let other women know what you went through or are going through (if you want to). Don’t be afraid to step up and say that this happened to you.
Find some way to heal your spirit, your soul, and your broken heart.
And remember: It gets better.