Preview

August 25 Week Four

The plastic test stick has two lines.

I should be thrilled. I wanted this. I try to imagine holding a tiny baby in my arms. Awestruck. But my thoughts quickly turn to all those other sticks with two lines, all the thwarted promise. My stomach churns, and it’s hard to breathe.

I stare at myself in the mirror above the sink, blonde hair starting to gray, blue eyes tired, fair skin pasty. Am I ready for this? What if I lose another baby? I open the bathroom door. Jon waits, hazel eyes wide, lips parted. His breath sputters, still labored from a ten-mile run. “Okay.” I nod. “Here we go.”

With each passing pregnancy, I’ve told him with less and less fanfare. The first time, we were in a restaurant. The second time, I teased him on the phone about the secret I couldn’t reveal. For the third, I left the test stick on the bathroom counter, asking him to bring me the sunscreen, the lotion, an endless list of urgent requests before he finally spied the stick. I can’t recall how I told him about the fourth.

I remember every detail of telling him about the losses.

“Yes!” He presses me against his sweat-drenched shirt.

How can he still react this way? I step back toward the doorway, away from his blind enthusiasm and his smell. The test stick lies flat on the otherwise empty counter. I stare like it’s a tarot card instead of a simple binary test. “How could this have happened right now? We stopped trying. I was using the ovulation predictors to know when not to have sex.”

“When did we stop trying?”

“Remember? We were going to get settled?” I walk into the nearly empty bedroom of the new home bought just last week. “The moving truck hasn’t even gotten here from California yet.”

We stand amidst bare eggshell walls with white sconces and windows without curtains. The renovated house we just bought in Boston, away from the strains of our life in San Francisco, was decorated so neutrally that no potential buyer would be dissuaded. With only a few pieces of rental furniture strewn about the soulless rooms, it feels bleak.

I think back to the last time we stood in a new home in a new place: San Francisco, eight years ago. Our lives were all about the possibility of newlyweds in a new city. I had just finished graduate school at the University of Chicago and Jon had just started a job in venture capital. We shared late dinners during long workweeks when we divulged every minute of our days, then we spent weekends exploring coastal towns where we whispered our dreams and imagined the children we would nurture. Our lives seemed almost impossibly idyllic.

But that was before all the tragedy.

“This isn’t the time to get pregnant. We agreed.”

He concedes that he must have forgotten our conversation. “But we’re going to have a baby!”

His fearless joy makes my chest sink. I’ve already lost four babies. Doesn’t he realize I could lose this one, too? And if I do, will it be my loss, or our loss?

Every tragedy has wedged a slightly wider gap between us. The first happened when our daughter, Maddie, was born twelve weeks premature. We watched her through different eyes as she fought in a neonatal intensive care unit for nearly two months before coming home. And then the losses came, when pieces of me shattered and he struggled to understand why. I’ve spent the last six years stumbling from pregnancy to pregnancy, filling the gaps with work as my grief mounted, grappling to reconnect the strands of marriage frayed after repeated loss was borne so differently.

I now stand before my husband of nine years, our experiences already diverging at the very start of this pregnancy.

“I haven’t even seen the new doctor here.” I shrug my shoulders.

“Don’t worry about the new doctor. Dr. Conover recommended him,” he says, referring to my trusted specialist in San Francisco. “And he’s at a Harvard teaching hospital. You know the guy’s going to be great.”

“I’m not scheduled to see him until late September. That was his first available.” I called for an appointment in July as part of my master plan: move to Boston in August, adjust Maddie to kindergarten, prepare for a pregnancy in the winter, or maybe the spring.

But this is only August. The moving truck isn’t even here. Maddie hasn’t started kindergarten, much less adjusted. And the last part of the plan isn’t supposed to happen for months.

“So call him now.”

I look at my watch. Five-fifteen. Damn. I need to start medication for the clotting disorder right away. I wince, thinking about the daily self-injections that may help sustain this pregnancy. May help sustain.

After all the diagnostic tests, doctors still aren’t certain why I’ve lost four babies. Some think the cause is Factor V Leiden, a recently discovered gene mutation that affects 6% of women. This usually dormant defect is believed to be activated by changes in gestational hormones, and is linked to abnormal blood clotting during pregnancy that can lead to fetal death.

I am one of ten million women in this country who carry this genetic error; I am also one of the lucky ones– at least I know I have this mutation. Because testing is so rare, few women know they are affected. For some, this lack of knowledge presents no problem; many women with Factor V Leiden have normal pregnancies. Others do not.

Heparin, the prescribed treatment, is considered unproven in traditional obstetric circles; medical guidelines do not yet recommend this treatment to prevent pregnancy loss.Despite strong and growing evidence, there have been no large treatment trials to date, and thus Heparin is not offered by many mainstream physicians, especially in the first trimester. Among doctors who do prescribe Heparin, most wait until the twelfth week of pregnancy to begin medication. But Dr. Conover, my specialist in California, starts patients on Heparin before twelve weeks, believing that this medication can prevent both early and later losses from Factor V Leiden. He convinced me that I should start this medication the moment I knew I was pregnant.

“I hope the new doctor agrees to give me the prescription.”

“He’ll prescribe the medicine. You’ll persuade him,” Jon says with complete confidence.

“Jon, you don’t know that,” I snap, feeling like he’s dismissing my fears too easily, fears spawned from contentious doctor visits when I had to push for conclusions and prod at diagnoses– when he was out of town, or in a meeting; when he wasn’t there.

Just last year I gave birth to twins at five months. The horror of losing these children was so tangible that we both quaked. When the shock dulled, I insisted on a wide range of tests– well beyond the few tests considered “standard”– to look for a cause of loss.

I saw four doctors, asking each why I’d lost my babies. None could answer with certainty. One believed it was a clear case of cervical incompetence, a premature weakening of the cervix believed to be the leading cause of second trimester loss. The next swore there was no basis for the last doctor’s opinion. Another thought the likely cause was my Factor V Leiden mutation.

That’s when I realized that medicine is about probability, not certainty. Doctors pursue treatments based on the likelihood that something will work, not the certainty that it will. This element of chance is especially pronounced in obstetrics, where research is grossly underfunded, leaving doctors to develop diagnoses based on opinions and outdated guidelines versus indisputable facts.

Jon locks his hands behind his neck “Okay. If he doesn’t give you the medicine, go the emergency room. Hell, let’s go right now.”

“Jon, an ER doc isn’t going to give me medication for something doctors aren’t even required to treat.” My shoulders tense with his last suggestion. He never saw the doctors, so he still doesn’t understand how I had to fight for diagnosis– how the medical community fails more than two million women who miscarry every year by ascribing their losses to “unavoidable acts of nature” instead of confirming their suspicion with testing.

Medical guidelines instruct doctors not to test for causes of miscarriage until two or moreconsecutive losses. This vague direction gives primary obstetricians wide discretion on whether women get any testing. High-risk obstetricians regularly see patients with multiple miscarriages– three, four, five or more losses– who have never been offered even the most basic diagnostic test: chromosome analysis of the lost baby.

After my first loss, I heard the explanation routinely given to women after miscarriage: ‘It was probably nature’s way of taking care of a problem. Half of all miscarriages are caused by chromosomal abnormalities.’ At the time, I didn’t see the inherent flaw in this logic: The other half are not unavoidable acts of nature; the other half are symptoms that something is wrong.

More than 60% of women who lose a chromosomally normal pregnancy have an undiagnosed but treatable medical condition. Most of these women remain undiagnosed because testing after miscarriage is so scarce. The result? A likely seven hundred thousand women lose pregnancies to treatable causes every year– and that’s only in this country. My twins, lost while I went undiagnosed and untreated, were a part of this tragic phenomenon just one year ago.

I slump down with my back against the laminate headboard of the rental bed. Jon follows and sits beside me. “Hey. It’ll be okay this time,” he says, stroking my arm. I take deep breaths and look toward my husband, try to touch the elation of this moment that he can still embrace.

This time could be different. We’re in a new place, getting a new start, away from the scene of all that we’ve lost. I scan the pale walls and restored floors and try to imagine the possibilities.

“But there were so many conflicting opinions, and we still don’t know if any of the doctors were right.” I’ve pored over piles of medical studies, discovering research that could support every opinion I heard, then others that contradicted studies just read. After all the consultations in California, grasping for a degree of certainty that doesn’t exist with subjective medical opinions, I had finally settled on a plan for the next pregnancy: Treat both of the diagnosed conditions since doctors can’t be sure which caused my losses. This plan requires that I start Heparin immediately.

“Dr. Conover wanted me to start Heparin right away, but other doctors didn’t agree.”

“Look. It’s going to be okay. I know you’re worried, but it’ll be different this time. We know what to do now. You have to believe.” He gently squeezes my hand.

I stand and smooth out the Holiday Inn-looking quilt that came with the rental bed. “Appointment or not, I have to see the doctor tomorrow. Maybe I’ll just show up at the office tomorrow. They’ll have to do something with me. Wanna come?”

“I can’t. My flight leaves at seven-fifteen. I’m in Raleigh, remember?”

I glance out the window and try to push aside my thought of another contentious doctor’s appointment, again fought alone.