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11/01/2005

Kiss of the Spider Woman

The only thing the title has to do with this entry is that the maternal/fetal medicine specialist we consulted was wearing a pilled black acrylic sweater festooned with silvery Lurex spider webs and giant sequined spiders.

It just got more gothic from there.

I've been putting off writing about our so-called preconception consultation for one simple reason: I'm not at all sure yet how I feel about it. But many of you have asked, so I'll just lay it out here, rapid fire, without too much commentary and with, alas, little finesse.

Let me start with a short primer on HELLP syndrome, so that the particulars of my case will make more sense.

No, no, wait, let me start by telling you that to our consultation I wore my lucky shoes — you know, the ones that reduced my feet to seeping stumps, but nevertheless carried me ably through one of the best weekends I've had in years.

Now, about HELLP syndrome. I've always heard HELLP described as a variant of pre-eclampsia, or a severe version of pre-eclampsia, or even impossible to have without pre-eclampsia. But this doctor characterized the diseases as two ends of the same spectrum, with the classic symptoms of pre-eclampsia (high blood pressure, proteinuria, edema) occupying one end and the classic symptoms of HELLP (hemolysis, elevated liver enzymes, and low platelet count) on the other. Some HELLP patients display symptoms of pre-eclampsia as well; some do not.

At our consultation I learned I had not, at least not at the time I arrived at the hospital. My blood pressure was merely borderline; there was no protein in my urine; and I was having no headaches or visual disturbances. Even my initial bloodwork wasn't especially alarming. Although my liver enzymes were slightly elevated, my creatinine levels (which indicate kidney function) were normal and my platelets had not yet begun to decrease. Oh, sure, I had plenty of what diagonisticians dryly call "upper-right quadrant epigastric pain" but which I call "HOLY JESUS CHRIST I JUST DRANK A SNIFTER OF LAVA," but the important point is that when I arrived at the hospital, I wasn't yet that sick.

Later in the day, though, repeat bloodwork showed that my liver enzymes had risen sharply while my platelets had dropped dramatically. It was then that I went into surgery, with an unambiguous diagnosis of HELLP. "They did everything right," the specialist said approvingly about the hospital team in Connecticut. With blood pressure that stayed resolutely within acceptable limits, and kidneys that showed no sign of distress, it had been prudent to wait for that repeat bloodwork. And with the first sign of my liver kicking into overdrive while my platelets plummeted, it was imperative that we deliver. They did everything right. I had believed so, because, well, you kind of have to when a doctor tells you your baby needs to come so early. But it helped me to hear it was true.

Then, a surprise. For the first time, we saw the pathology report from my placenta. We were shocked to learn that it had an infarct — simply speaking, an area of dead tissue resulting from compromised blood flow. While it's normal for there to be some infarction in an aging placenta, it's never normal in one delivered prematurely. Such infarcts are often associated with placental abruption, intrauterine growth restriction (IUGR), and fetal death.

So it had been clear from my condition that Charlie needed to be delivered; my body obviously couldn't sustain the pregnancy. What we hadn't known was that there was another reason he needed to come out: if he'd stayed inside, the best-case scenario is that he would have become less healthy as his blood supply diminished. "He wasn't small when he was born," the specialist told us, "but he was on his way to being." I now find myself in the very strange position of being glad he was born so early, before anything worse could happen.

We discussed what kind of prenatal care would be warranted in a future pregnancy. Basically, the doctor seemed to be saying they'd advise me to acquire a comfortable refrigerator box and build myself a tidy little shantytown in the office's parking lot so that I might be available for close and frequent monitoring, including tests of fetal biometrics and uterine bloodflow. She would also prescribe baby aspirin, quoting studies that found not only a lower incidence of gestational hypertensive disorders in patients who took it, but birth weights that were higher by an average of 200 grams. (In preemie terms, a gain of 200 grams is enormous.)

Then she talked a bit about abnormal placentation, which was obviously at play this time around (complete placenta previa). She wondered aloud — and it was no more definite than that — about my other pregnancies (an ectopic and a miscarriage). Why, she wondered, did two of of my three pregnancies take hold incorrectly? And why did the third, which was a properly placed intrauterine pregnancy, not thrive? Was there something about my uterus that was inhospitable? Since that is mostly unknowable, she seemed more concerned than I was — though still not greatly — that placenta previa might in fact recur.

Almost as an afterthought, we all agreed with a great deal of jollity that we didn't even need to discuss my risk of a recurrence of gestational diabetes. As complications go, and especially as complications I've experienced go, that's a minor concern, and a manageable one at that.

And then we were suddenly in the thick of it.

Thanks to the vast medical library Google has kindly made available to me because I'm so excellently cool, I had read that the recurrence rate for HELLP is a matter much disputed, with any number necessarily being confounded by the fact that many, many women who've had HELLP never attempt a subsequent pregnancy. Nevertheless, some sources put the rate of recurrence at 4%; others put it as high as 27%. With the caveat that we don't know yet whether I have any interesting underlying conditions, for which ten vials of my blood are currently being tested, this doctor quoted my risk at 50%.

Wait, wait, it gets better.

With a lot of disclaimers — "I'm being as conservative and pessimistic as I can on this one" — she estimated our risk of having another severely premature baby — "at 32 weeks or before" — at 50%.

"But," she hastened to add, "your chances of a good outcome are very, very high," especially if the bloodwork reveals any condition that's correctable with medication. In fact, she concluded, in language that is interesting in its ambiguity, "I would absolutely not advise you not to try again."

So what do you make of that?

One last thing. I must point out that when Paul and I left the appointment, we were rather more upbeat than not. It wasn't because the future was suddenly looking rosy, or because we finally had all the information we needed to make a choice we could live with. It had more to do with feeling we were in good hands, that I'd be cared for vigilantly if we chose to try again, that a pregnancy could theoretically be managed in such a way as to limit the danger to a baby and to me. And that we still, after all, have options.

No, wait, I lied. That's not the last thing. This is: I spent a large part of my morning investigating an unpleasant funk wafting through the back hallway where we hang our coats and leave our shoes. The source of the funk turned out to be an ectopic — get it? — deposit of cat urine, which was left, I presume, when the litter box was blockaded by a baby gate left inadvertently closed. And do you know where the cats had done the deed?

Why, right on my lucky shoes.

So what do you make of that?

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