But I found that out only last month.

by Emily Willingham

 

You’ve been there, right? In the doctor’s office when a clinician takes your blood pressure, whips off the cuff, types in a value, and then pops the thermometer in your mouth without a word. Like, you know, a word that includes the numbers that person just took down about you. Your numbers. About you. I always make a point to ask. After all, those numbers are mine.

Once though, there was a number I didn’t ask about, one that it didn’t even cross my mind the ask about because usually, that number is one. Already the mother of two sons, I became pregnant in 2005. It was a wanted pregnancy, but it happened at the same time I was experiencing either an Epstein-Barr or cytomegalovirus infection. In about the fifth week of gestation, I started to bleed, a weird, dark, inky kind of bleeding like nothing I’d ever seen. A vaginal ultrasound showed a tiny silver pulse, so everything seemed OK. Blood measures of human chorionic gonadotropin climbed so astronomically that every clinician told me that there was no possible way this embryo was failing.

So I waited for a bit and went to the OB-GYN for a 10-week visit, at 8 weeks of gestation. The office staff were overwhelmed and curt. The appointment I had, with a midwife, was hasty, at best. Uneasy because I’d had continued bleeding, I asked to be sent for an ultrasound to confirm that everything was still OK. The midwife assured me that because my recent hCG values were in the high five figures, there was no doubt all was well. That night, I went online and added a few maternity items to a shopping cart. I was happy.

Pulling into the parking garage of the hospital facility where my ultrasound appointment was the next day, I suddenly realized that I hadn’t done my duty of drinking a whole lot of water beforehand, to expand the bladder and facilitate embryo visualization. I hastily bought a bottle and was drinking it as the ultrasound tech, a bald, rather cranky young man, retrieved me from the waiting room. He seemed angry that I was drinking the water and informed me, as though I were a preschooler, that I might as well quit because it was obviously too late for it to do any good.

And indeed, he was correct. His brusque manner changed as he performed the procedure, his facial expression shifting from cranky to sobered. When he disappeared and returned with a female tech, I knew it wasn’t good. We switched from abdominal to vaginal ultrasound, and yes, it was too late. No silver pulse. Nothing, they told me, to indicate embryonic development beyond 5 or 6 weeks. The embryo, it seemed, had died that night I’d gotten confirmation of the heartbeat.

In these situations, the protocol, it seems, is to wait a week. After having the most intense, guttural, unformed emotional response of my life in the parking garage, I drove home to wait. In the interval, they did yet another hCG blood test. The values remained high-indeed, they’d gotten higher, climbing into the six figures. Google U told me all about the unlikelihood of these values in a failed pregnancy, and how statistically unlikely it was for a woman with these values to be experiencing a missed abortion. I’d been assured at the OB’s office and in the previous ultrasound that the climbing hCG levels meant good things.

But the next week placed me squarely in the “weird statistics” category. No more development. No more progress. No heartbeat. The OB-GYN called me later that day to tell me that a prescription for misoprostol awaited me at my pharmacy. When I went to pick it up, the pharmacist told me to “have a nice day.” Alrighty.

The abortion seemed to work. Certainly, there was evidence of its having worked. The next day, we held my second son’s third birthday party, which wasn’t easy to do. In the following weeks, though, I still felt exhausted and nauseated. I still bled. Yet another hCG test showed that I was still making the hormone at fairly low levels, and then there came yet another ultrsound. At one moment during that appointment, the tech paused and said, sing-songy, “Uh-oh. What’s thiiiisss?” And my heart leaped.

But it was just the placenta, lingering, pulsing with blood flow of its own. And the beat of my own leaping heart. The misoprostol simply hadn’t completed its job.

A DNC with a different OB-GYN followed, and that was the end of that, physically, at least. Maybe it’s the scientist in me. Maybe it’s the obsessive. But I just couldn’t wrap my mind around those impossible hCG values, around the entire process of the missed abortion that lasted weeks and that required, finally, a D&C to resolve after the misoprostol failed. For years, I had this lingering “Why?” in my head, trying to sort those data into a scenario that fit what had happened.**

Until last month. We’re back at the facility that did the ultrasound, this time to see specialists for our oldest son. It’s 2013, so now we have special online access to our medical records. To my surprise, my records from 2005 popped up. Covering those dates, that series of weeks in which I had an abortion that refused to resolve.

I didn’t look right away. I waited for a couple of weeks. And then, one day, I just clicked. I don’t know what I expected. I saw the hCG values, tested repeatedly, reaching a high of almost 200,000. I learned of blood test results no one ever told me about, indicating high white blood cells and low hematocrit (I had, after all, been bleeding). And then I saw the report of that final vaginal ultrasound:

FINDINGS: Intrauterine gestational sac is identified. Two amniotic sacs are present within the gestational sac consistent with a monochorionic, diamniotic pregnancy. A single embryo is present, however, a heart beat could not be demonstrated. The crown-rump length measures 0.39 centimeters, with no interval growth since prior examination. The calculated sonographic age is 6 weeks 1 day. IMPRESSION: Twin failure with fetal demise. These findings were communicated to Dr. Redacted at time of examination. END OF IMPRESSION.

An impression that was never shared with me.

All of which is to say: When you get numbers that are mine, not yours, Dear Clinicians, I have a right to know what those numbers say, and you have a responsibility to tell me, at the time. No one should have to wait 8 years to find out.

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And a little more information

**Although a couple of OBs who have commented to me have not raised any issues with this post and confirm that a twin conception is a possible explanation for high hCG, one OB (none of these OBs has ever been my personal physician) has written to say that (1) despite the description from the ultrasound results, the reading could still have been a singleton pregnancy or one with two sacs (my inference) and (2) the information regardless doesn’t necessarily resolve the questions of why I had two bleeds weeks apart, a good ultrasound, and climbing hCGs until I used the misoprostol. It is possible to have climbing hCG levels, even high ones, in the presence of a loss. In the interests of clarity and to avoid misleading any women who might desperately be searching the web for information (I get that!), I feel that should be included here.

What was seen on my ultrasounds was a shared chorion (the outer sac) with two separate amniotic sacs (the inner sac; identical twins can also share a single amniotic sac). Only one of the amniotic sacs appears to have contained an embryo at the 8-week imaging, based on the above report. At most, then, the situation was one of a vanishing twin, possibly, but still a potential explanation for the hCG levels that neared 200,000 even three weeks into the missed abortion. The chorion is the part of the embryo that contributes to the formation of the placenta and secretes the hCG; levels of hCG in a monochorionic twin pregnancy aren’t as high as those in a dichorionic pregnancy, but they tend to be higher than levels in a singleton pregnancy. My personal guess at the time and in the preceding eight years was a partial hydatidiform mole-based on a few factors-but to my recollection, there was no pathology following the D&C, so I never got that confirmed or denied. Obviously, no one ever discussed any of this with me. And finally, the term “abortion” is being applied to a first trimester termination, either spontaneous, pharmaceutical, or surgical; in this case, it ended up being all three.

Regardless of these details, which I include here and will update and clarify as needed for women seeking information, they do not detract from the point of this post: I never heard from the OB’s office after receiving the misoprostol, never received the information in this report, and was never told anything whatsoever about these ultrasound results. Get your numbers.

To avoid a repeat experience, I always make sure to sign a HIPAA release to have my records sent to me. After all imaging, I request the CD of the imaging and that a copy of the reader report be sent to me. After all clinician appointments, I request that the clinical note from the appointment be sent to me. After all blood tests or any other testing, I make sure to request that a copy be sent to me, as well. Following any hospitalization or surgery, I again make sure to request that all related records be sent to me. It is clear that if I am to know what’s going on with my own body and health-and those of my children-I have to be active in requesting these records and ensuring that I receive them.