A Geriatric, Cystinosis Pregnancy Part 1: When Pregnancy Failure or Loss is Misdiagnosed

I’ve been meaning to relate the story of my pregnancy for a while now, but due to previous losses it’s actually somewhat difficult to believe that I really am pregnant and well into my second trimester.

But let’s start at the beginning. Early summer, 2018.

My dates were known from the get-go due to close medical monitoring. With a positive pregnancy blood test at exactly four weeks, things initially looked good.

The trouble began two days after that first blood test, when my pregnancy hormone hadn’t doubled. I received the phone call with the word every woman trying to get pregnant hates to hear: “nonviable.” Repeat the test in two more days, but it’s likely a nonviable pregnancy.

My hormone rise was even worse on the third and fourth checks, with a doubling time longer than 96 hours. Nevertheless, the level was rising, and because of my history of ectopic pregnancy (implantation outside the uterus), the doctor wanted to do an early ultrasound. A rising level coupled with an empty uterus could indicate another ectopic.

So at five weeks and change, I went in for the ultrasound. The doctor wasn’t available, so a nurse performed the test. She searched and searched and took a few images of my uterus for the doctor. She then turned off the machine and told me what would probably come next.

“I didn’t see anything. The doctor will likely order a blood test to make sure you’re healthy enough to receive methotrexate, and we’ll take it from there.”

I stared blankly into space while she went to hand the images to the doctor. Methotrexate is used to treat ectopic pregnancies that are caught early. It essentially arrests growth by depleting the body of folic acid; an embryo outside the uterus will typically stop growing and be absorbed into the body after methotrexate administration. Last year, I had an ectopic that had to be treated with two rounds of methotrexate.

An embryo outside the uterus cannot survive, and despite advances in modern medicine, there’s no way to move it to where it needs to be. It’s mind-boggling and tragic. What adds to my frustration is the fact that I am an organ recipient: someone else’s kidney thrives inside my body. It came from miles away and was surgically placed hours and hours after being removed from its owner. And yet we don’t have the knowledge to move a growing embryo a couple of inches within a single living body?

But to go back to the narrative at hand, the nurse returned to the exam room some minutes later. Clearly a bit frustrated herself, she told me that the doctor felt like he saw something in my uterus. Her tone of doubt told me she wasn’t buying it, but thankfully she was sending me home without orders for blood work or methotrexate.

I went home angry — angry that the nurse had jumped the gun and even breathed the words methotrexate and ectopic. Nevertheless, I didn’t have a whole lot of hope.

I returned at six weeks, one day (again, my dates were exact). This time, the doctor performed the ultrasound. He eventually found a tiny sac measuring closer to four weeks. It was empty.

“I thought I saw something for a minute, but I was mistaken. There’s no yolk sac or fetal pole, only a gestational sac. I’m so sorry.”

At six weeks, you can’t always see a heartbeat, but you certainly should have more than an empty sac. The doctor left the room and came back with a brochure about my options. He recommended a D&C right away. (I had a D&C with a previous miscarriage, though in that case, I was nine weeks and there was clearly a baby, but its heart had stopped beating at seven weeks.)

I said I’d like to wait and miscarry naturally this time. He said we could give that a try, but due to risk of infection, if I hadn’t passed tissue within a couple weeks, I’d need to call to schedule the D&C.

Due to it being a medically assisted pregnancy, I was also on three hormone medications to help keep it healthy. He told me to stop all three immediately. Doing so typically results in miscarriage in the case of a nonviable pregnancy within 10 days.

I went home angry, but this time at no one — only at the situation. I put my hormone medications away. I started reading accounts online to get an idea for what to expect. It did sound like most women miscarried within 1-2 weeks of stopping the medicine.

I had a bottle of craft beer. It tasted less wonderful than I remembered. It was a Monday. I went to sleep and slept soundly.

On Tuesday I went to work and pushed through a few unproductive hours. By about 1 in the afternoon, I knew I wasn’t getting any work done. I told my boss I needed to go home. I think I said something about “mental health.” Something was eating at me.

I awoke just after midnight on Wednesday morning. I’m not sure what woke me, but it was jarring. I heard a vocal message loud and clear: “But what if? What if they’re wrong?”

So I got up. I went to the medicine cabinet. I took everything out. And I took the medicines I had discontinued two days earlier.

That day, I went back to work. I found myself wondering what on earth I was doing. Taking these medications with a blighted ovum (empty sac) would just postpone the inevitable miscarriage. And the physical miscarriage was necessary to move on.

I decided I needed a second opinion ultrasound. If it confirmed the blighted ovum, then I could truly stop the medications with confidence. I contacted my primary care doctor for the referral. She wouldn’t do it. I fought her reasoning tooth and nail. She eventually ordered it — and insurance refused to cover it. The ultrasound department refused to schedule it for anything sooner than two weeks out. But I knew I couldn’t take those medications for two weeks if I had a blighted ovum.

After many messages and phone calls, Wayne and I succeeded in getting me an appointment for that Friday. My blighted ovum was diagnosed at six weeks, one day. My second opinion ultrasound was scheduled for six weeks, five days.

Fast forward to Friday. The tech started the process for an abdominal ultrasound. “You won’t see anything,” I told her. “It has to be transvaginal.”

“I’ll do both. But this first,” she told me.

The wand passed over my pelvis. I saw the bean-shaped sac on the screen. And I saw something more. Something that looked a bit like a grain of rice.

“There’s something in there!” I gasped.

She quietly turned the screen away from my sight. “Let me look. I promise I’ll tell you what I see.”

She transitioned to the transvaginal ultrasound. After several tense minutes, she turned the screen toward me. “Do you see that flicker?” she said.

No.

No.

I started sobbing uncontrollably. Yes, I could see the flicker.

“Do you know that that is?”

Yes, yes, I know what it is.

It’s a heart.

“They wanted me to schedule a D&C this week,” I whispered.

“I’m awfully glad you said no,” she said. “He or she is measuring six weeks, three days. Congratulations.”