Here Be Monsters

by Catherine Jagoe

Getting pregnant upends your life even if you planned it. An accidental first pregnancy, at 38, was like a detonation, blowing everything I thought I knew about my body, my life, and my career sky-high. The embryo as limpet mine.

It wasn’t a problem of material circumstances: I had a job, tenure at a midwestern university, a husband, a house; we could afford a child. The problem was my heart. I didn’t want children, and, at that point, in 1999, I couldn’t have one: after a series of agonizing episodes of depression, I was on a medication regime that included lithium, which is known to cause birth defects. The FDA lists it as a category D drug, contraindicated in pregnancy, citing “evidence of known fetal risk”—above all, to the baby’s heart. The pompous and inept Polish psychiatrist who prescribed it had lectured me, as he wrote out the first prescription, not to get pregnant.

So I had an abortion, a process fraught, as it is everywhere in this country, with needless difficulties and cruelties. I had to drive to another city in a Wisconsin blizzard and run the gauntlet of placard-wielding right-to-lifers with megaphones, but I managed to get a termination at six weeks. Immediately afterwards, my husband and I left for a long-planned sabbatical in Barcelona. In our new, rented apartment, I sat around in the shards of what I knew. The research I was supposed to do suddenly seemed to have been envisaged by another person, one who had nothing to do with me. In fact, I couldn’t imagine continuing in that life at all. I blamed my toxic job for the fact that I’d had to take lithium at all. My years-long struggle to fit into the cutthroat world of academia had exacerbated my depression and ultimately led me to a place of grief and death. I tried to write, but all that emerged were fragments.

In the months afterwards, I felt broken, not because I was second-guessing my decision but because nothing about my life made sense anymore. I’d known from the moment I saw the test result that had I been medication-free, I would have kept the baby. This was a shock, after my years of active childlessness. My not-wanting a child had, it seemed, been mostly not daring, not believing that I was capable. I did want one. The problem was, could I find a medication safe enough for pregnancy? And, even if I did, could I get pregnant a second time, this late in the game? If we became parents and depression attacked me again, how would I protect myself and the child?

Since adolescence, depression has been a lurking, threatening presence, a monster in the wings that can prey on me seemingly at random. Pregnancy and depression felt similarly fearsome, both involving a loss of self, engulfment in another state. In pregnancy you become a vessel for another being. In depression, the reverse is true: you are swallowed up by it, like Jonah by the whale. Both involve an unknown future: you don’t know if the depression will lift, just as you don’t know how a pregnancy will turn out. I was afraid of both, as they are linked and complicated by my medical history. I had reason to fear that any pregnancy of mine would turn out badly—that the child would have a birth defect and/or that I would be a defective mother.

     *

Lithium is a teratogen, a word that comes from the Greek “teras,” monster, and “genein,” to produce. It is a word I came to know intimately as I scoured medical sources on psychotropic medications in pregnancy. It was a sobering business. Most antidepressants were in the murky Category C, meaning adverse effects had been shown in animals but no human studies existed. The antidepressants I had taken or could take were all “maybes,” with no proof of their safety for pregnant women. So, after much wrestling with the issue, I resolved to try doing without antidepressants altogether. When we returned to the United States six months later, I tapered off my meds and embarked on a program of acupuncture and traditional Chinese herbs twice a week. The Chinese medicine doctor, a quiet, dark-haired woman with a peaceful office, diagnosed me with “stagnant liver qi” and promised results. I left my early sessions calm and hopeful. But by ten weeks in, my mood was tanking, as so often before, my brain very practiced at reproducing suffering. I was becoming more and more fatigued, with insomnia and nightmares; intense pain and hopelessness were taking over. I was veering into perilous waters, starting to think longingly about suicide.

*

Unwilling to go back to the Polish psychiatrist and be lectured on my failures, I sought another provider, and ended up seeing Dr S., a tall, blond, soft-spoken woman in her mid-thirties with a searching gaze.  She had two young children herself and an impressive grasp of the latest research on medication use in pregnancy. She suggested I try one of the newer SSRI’s, citalopram, explaining that despite its Category C status, new data showed no significant risk to babies born to mothers taking it. SSRI’s are wonder drugs; I had tried several of them, always with near-miraculous results. But they come with a life-altering cost: sexual desire and sensation vanish. I experience this as a kind of amputation that renders me a female eunuch. SSRI’s banish depression—which Winston Churchill called the “black dog”—but in the process, they also lop off a central part of me. Knowing I would probably be taking antidepressants for the rest of my life, I had learned to avoid SSRIs as a long-term option. We decided that I would start taking citalopram under the understanding that it was a temporary measure, to tide me safely through pregnancy if I did manage to conceive. Within weeks, it had rescued me, serotonin providing the buoyancy I lacked, propelling me up and out of my dark well of despair. Life, and even motherhood, started to appear possible again.

I found an ally on the how-to-get-pregnant-at 40 front in Isa, a Spanish friend who was also hoping to conceive. That spring, on one of our weekly walks to the swimming pool, she recommended the Billings method. “It’s messy because you have to stick your fingers in your vagina every day, but my mother teaches it in Madrid and it works,” she confided, grinning. “You have to take your temperature and check your cervical mucus daily so you can figure out when you are ovulating.”

“How can you tell?” I asked, glad we were speaking Spanish, since it meant the young men passing us on the sidewalk likely couldn’t follow what we were saying.

“Well, your temperature dips just before and then rises and stays up for three days. You’ll have to do it for a few months first to see a pattern. I already started. But the big thing is your vaginal secretions. When you’re not fertile, they are cloudy and white and sticky. But when the mucus turns clear and slippery and you can stretch it between finger and thumb like egg-white, bingo! You’re fertile!”

*

After a few months’ hilarious introduction to the life of our vaginas, Isa was pregnant and I could see my own pattern emerging, a fertility window opening for a few days every month like a gate to a secret garden. I’d spent 25 years doing everything possible to avoid having a child. I am a cautious person and fond of control. The thought of attempting to conceive still felt like jumping off a cliff. Imagining the unknowns ahead, I was reminded of medieval world maps that labeled uncharted territory with the warning hic sunt dracones (here be dragons) and drawings of fantastical beasts and monstrous, deformed races—people with the heads of dogs, people with no heads and eyes in their chests, one-legged people. I myself could have been born deformed, with missing or truncated limbs perhaps, except that my mother staunchly refused to take the thalidomide the doctor offered her for morning sickness.

*

I stood in the bathroom the day after 9/11, staring into the mirror. The radio was on in the living room and I could hear the hoarse, somber voice of Scott Simon on NPR, talking about the pall of smoke and ash covering Manhattan, the vast piles of fuel-soaked rubble, the panicked families besieging the hospitals with photos of loved ones, the six thousand body bags on order. I’d been insulated from the horror by a secret hope and obsession: my period was late and the next day I would be taking a home pregnancy test. The chipped honeycomb tiles felt cold under my bare feet. I looked down again at the two purple lines traversing the test strip I had peed on five minutes earlier. It was positive.

   *

In the midst of my stupefaction, euphoria, and nervousness, the next hurdle presented itself: my age. At 30, a woman has roughly a one in 1,000 chance of conceiving a child with Down syndrome. At 40, my odds were one in 82, and one in 51 for other kinds of chromosomal abnormalities. So I scheduled the earliest possible prenatal test: chorionic villus sampling, or CVS, at eleven and a half weeks. We saw the baby for the first time on the ultrasound screen, tiny and very active. Its heartbeat was 156. It felt surreal to see its small head, hands, arms, legs, in grainy black and white, like footage from the moon. I closed my eyes for the procedure because I was frightened and focusing on my breathing. It involved inserting a long thin instrument through the vagina and cervix into the womb to take a sample from placenta. My husband, Ned, said he was glad I hadn’t been watching the screen, because the baby recoiled from the foreign object. I was shaky afterwards. I had no bleeding, but I couldn’t relax, on tenterhooks as we waited for news. I tried to steel myself for the worst while simultaneously hoping for a result that would pronounce us out of danger.

CVS tests yield a rapid culture result and a longer, two-week result. Three days later, I came home to a message on the answering machine from the clinic. “It’s all good news,” the nurse said. The baby’s 46 chromosomes were all present and normal, and they contained a “Y,” meaning that it was a boy. I was hugely relieved. Now I could actually let myself be excited. That night I slept well for the first time in a long while.

Just before Thanksgiving, the longer culture results came back. To our dismay, they contradicted the previous ones. There was something terribly wrong with the creature I had begun to call “him”, not “it.” Not Down syndrome, but a catastrophic and vanishingly rare defect on chromosome 7. There were no other recorded living cases anywhere in the world. Five other babies had been born with other chromosome 7 abnormalities, but they all had major problems and died early. If our baby really had this, he would end up so severely deformed that he likely wouldn’t make it to term.

But there was a chance, the obstetrician told us, that this result was nothing to worry about, a false positive. The test might have picked up an abnormality limited to the placental cells and not the baby’s, something she called “confined placental mosaicism.” She advised me to wait and have an amniocentesis at 15 weeks—another long needle and risk of miscarriage. The days went by in an agonizing limbo. “The awful uncertainty goes on,” I wrote in my journal. “Time has taken on a sludgy consistency, weighing on me like lead. I dread feeling the baby start to move, still not knowing whether I’ll choose to let him live or have him put down like a homeless kitten.”

*

“This is what I was afraid of, given your age,” our friend Greg said.

“I can’t sleep for thinking it’s my fault for taking DES when I was pregnant with Ned,” my mother-in-law worried over the phone.

“You should read the memoir Expecting Adam,” said an acquaintance at the swimming pool. “It’s about an academic who finds out her unborn baby has Downs. Those children are so precious and rewarding.”

“Right, thank you,” I replied, awkwardly. I was uncomfortably aware of how morally repugnant—monstrous, to some—my preference to abort an “abnormal” baby was. But I didn’t think I could ever be that loving woman in the memoir. I wasn’t sure I could raise an emotionally healthy child, worried that my own mental health problems would damage him. I couldn’t damage him physically too. I couldn’t live with the guilt, the work, the judgment of others. Given my struggles with depression, the challenges of raising a child seemed gigantic, so much so that I had hesitated and delayed until the last possible moment. I could not imagine how we would manage with a special-needs infant.

*

Instead of settling the question, the amnio reversed the CVS results: the initial, quick culture confirmed the damaged chromosome. After getting the bad news, Ned and I stayed up late looking up “isodicentric tetrasomy of chromosome 7” on the Internet. Nothing we found was good. That night I dreamed we had found a direct line to the baby on Ned’s computer, a screen that showed us a foot, hands, his face and body up close. The baby had brown eyes and lots of black hair. “How can you have all that hair, this early?” I asked him. I scrutinized him for defects. Were his eyes uneven? His nose misshapen? Was there something funny about his ears? Then I dreamed that, at my request, someone had aimed a perfect rifle shot at my heart. A neat round hole went straight through me, taking out the troublesome part. Better off without that, I thought in the dream.

*

The longer amnio culture, however, indicated a perfectly healthy baby. The clinical genetics team were fairly sure he was ok—but not entirely. For all their state-of-the-art technology, the outcome of this pregnancy was still unknowable, potentially monstrous. “Wait and see,” they said. “Have a full ultrasound with a pediatric cardiologist at 20 weeks. That way, you’ll still be in time to get a termination before the 22-week cut-off.”

The next three weeks went by in slow-motion misery. I hadn’t yet told everyone that I was pregnant. I couldn’t prepare for life as a parent, imagine the child, choose names, send out announcements, since there was a very real chance I might choose another abortion. It was hard to sleep. I went to work like an automaton and spent the rest of the time trying not to think, dulled by the threat hanging over us, and consumed by worry.

At the 17-week ultrasound, all the baby’s organs looked fine. We saw him kick and move, put his hands to his mouth. His bladder was full, the sonographer said, meaning his kidneys were working. We watched the valves pulsing up and down on the four chambers of his tiny heart. She printed out a roll of photos for us, including two of his penis. How can a 17-week-old have a penis already? I marveled. My stomach was still flat.

*

At 20 weeks—the midpoint of pregnancy—we went back to the hospital for the definitive, detailed ultrasound. As I lay on the sonographer’s table with a full bladder for yet another session of gel and transducer, the door opened, and there was a collective gasp. The attractive pediatric cardiologist with the long Indian surname I had barely noticed on the appointment card was Shardha, the wife of a close colleague of Ned’s. Since we hadn’t yet told his friends, she was as surprised as we were.

Her ultrasound was very thorough, and she talked us through it. Organ after organ passed muster. She could see no defects in the baby’s heart or other body parts. “He looks completely normal,” she concluded. The clinical geneticist concurred: he couldn’t guarantee anything, but he thought the genetic results were an artifact of testing, not representative of the baby’s cells. If we chose to go ahead, he would examine the child at birth. Meantime, he wished us luck. We emerged cautiously hopeful but haunted by the lack of certainty. We’d exhausted our options as far for diagnostic testing and prediction. We were almost out of time. Now we had to make a decision that nobody else could make for us.

*

I’m a pretty risk-averse person. But apparently less than I thought: even I couldn’t terminate a pregnancy that seemed to be going so well, despite the dire test results, and especially not at 20 weeks. I’d already felt the baby stir, the odd flutters called “quickening.” “This baby seems pretty well anchored, good company, undemanding, and determined to live. Just quietly thriving,” I’d written the week before in my journal. Before becoming pregnant, I’d worried about the way pregnancy would change and deform my body, unsure how I would feel about that. Transplant surgeons see a fetus as, effectively, an allogenic tumor (allogenic refers to being foreign, but from the same species), but one that the mother’s immune system does not reject. Would I feel that my body didn’t belong to me, that I was harboring some unknown, baleful thing inside me?

However, freed from the black dog of depression that has lurked around the map of my life for so long and almost destroyed me several times, I didn’t experience pregnancy that way at all. I had been frantic with worry about the test results, but that sadness and worry felt different to the pain of depression. I felt comfortable in my body, even proud of it, for the first time, and at ease in the company of the baby I was carrying. It was, I wrote at the time, “like holding a lover’s hand everywhere I go.” I felt intimately accompanied by this child. I couldn’t face starting over, so we went ahead, forging into our own particular uncharted terra incognita.

*

We couldn’t have known it then, but we’d been dealt a good hand after all: our son, who is now 19, was born healthy and strong. No dragons, no monsters, no strange deformities, except those conjured by the testing technology, which turned out to be chimeras, fictions. If I’d had no testing at all we might have had much less to worry about. His head was temporarily conical and his nose was smushed, but that was because he got stuck in the birth canal for a while and kept having his face mashed against my pelvic bones by contractions. The geneticist examined him at two hours old and pronounced him absolutely fine: the only slight oddity was in his hands. He has a single crease across each palm instead of two, like most of us. This is seen in 1.5 per cent of the population, especially males. People with Down syndrome and other chromosomal abnormalities have it, but also “karyotypically normal” individuals. In palmistry terms, my son’s heart- and head-line are fused: a symbol of what I had to do, to create him, and of the kind of life I was choosing to live from then on. A different journey into the unknown was beginning.

 

Catherine Jagoe is a translator, essayist and poet whose nonfiction has appeared in numerous journals including Gettysburg Review, Fourth Genre, Belt Magazine, TriQuarterly, Under the Sun, Ninth Letter, and American Athenaeum. She won a 2015 Pushcart prize for nonfiction and received notable mention in the 2019 Best American Essays. Her website is www.catherinejagoe.com.