|The baby is here, already tired from managing all her tubes.|
“Of all the major birth defects, this is the one to have.”
For a while, that was the good news. But the patient was no larger than an acorn, making the diagnosis difficult to pin down from our macroscopic viewpoint there on the outside of my wife. Sure, our doctor looked like Billy Bob Thornton and had a peculiar way of sitting on the edge of a chair, but there was no reason to doubt his esoteric, jargon-laced explanation of our first ultrasound: gastroschesis. He traced the glowing images with his pen, outlining the tragic dimensions of our bubble-on-bubble error in mitosis. To borrow the ruthless later phrasing of a cudgel-tongued friend of mine, our baby would be born with its guts in its lap.
Good news, because, in this age of medical miracles, it was deemed fixable. It is essentially just an epic hernia—a hernia from Hollywood, or from video games—except for the auxiliary complications. The ruptured section of intestine is unprotected, which can lead to “bowel death”—a phrase that is either funny or horrifying, depending on if you are or are not Beavis and Butthead. Worse, the test for spina bifida would come back positive regardless, because gastroschisis dumps the same chemical markers (and probably others) into the amniotic fluid. “Other related birth defects are rare,” states the gastroschisis literature. But one of my mind’s early assertions was, “Just because we have one problem, doesn’t mean we can’t have another.”
We were not yet parents, but we were getting a high-octane preview of that special anxiety accompanying the stewardship of life itself. We soon scheduled our own blood tests for genetic disorders, but how far would we go after that? Amniocentesis seemed inevitable (and we would have a narrow window for it after our bloodwork came back), until I learned that it came with a danger of miscarriage. After two recent miscarriages and a 40th birthday, my wife insisted that this was our last shot. (I asked her to keep an open mind, if for no other reason than to avoid the additional stress of “last chance” thinking—but was I just keeping a door open for abortive thinking?) The options dwindled as the stakes rose.
Every parent-to-be faces the void of uncertainty, but bad news has a way of setting precedent. Although there is nothing you can do to fix it, do you just sit back and let it swallow your outlook whole, let it become, as they say, your “new normal”? The technology brought to bear at this stage, while amazing, offered no immediate treatments or solutions. We could only hang on our little tadpole’s every wiggle and sonagraphic phantom, watching it like a shadow-puppet’s negative in the dim theater of the ultrasound room. We listened to our doctors, but each night we became like banished Eskimos, adrift on our ice floe of worry.
In this morass of gloomy predictions and ethical dilemmas—another era’s “dark night of the soul”—one’s mind scrapes at religion’s root: Why did this happen? Is there nothing to be done for it? Operating on the faint fringes of medical knowledge, most people find faith their last assurance. Not only do we want, in the words of Nick Cave, to “call upon the author to explain,” we also might like said author in our corner. But in the author’s utter and everlasting silence, I have yet to pick out a central narrative, or identify a willingness to take sides.
Our bloodwork came back normal. Then new ultrasounds ushered in a new diagnosis: omphalocele would be our new nemesis. It’s rarer, and potentially more serious, and with a whole different set of correlating problems: high concurrence (40-50%) with heart defects and genetic disorders such as Down Syndrome and the variously evil “isotopes” of Trisomy. It is often more challenging for surgeons because it affects structures closer to the symmetrical core of the body, such as genitalia. The delivery might be moved to a bigger city, for access to specialists.
Luckily, omphalocele has no known risk factors, so neither of us had to assign blame or regret. Well, there was one, but it was insignificant: aspirin taken to reduce the risk of miscarriage may have doubled the likeliness of this defect—from 1 in 5000 to the ballpark of 2 in 5000. Almost negligible, but still enough to briefly upset Heather. And insufficient to erase the litany of other ticklish doubts—was it radon gas, cell phone radiation, weed killer, my offensiveness to God? I refused to color it with meaning, even in the karma-centric way. My sister, after giving birth to a dwarf, said the universe gives people what they can handle. That is a healthy worldview, as long as you can handle what the universe dumps on you (Can you handle it, AIDS-afflicted Sudanese woman watching your third child die of diarrhea and guinea worm?). On the other hand, I think “Shit Happens” is so tired that it doesn’t even make a good t-shirt anymore, much less an operable worldview, but it remains metaphysically irrefutable.
Of course, the cause mattered less than the effect. With our usual irreverence, we laid out our demands. Heather made a slogan-worthy statement which we repeated for our own amusement: “Maybe we can do without a bladder, but a central nervous system is a must.” We agreed that certain agonies are simply too much to ask. For those parents who want to go full-term with Trisomy 13, I wish them well, but I decline to fuel a misery engine. There’s only so much crippling a little bird can shoulder before I will step on it. For those who say human life is set apart, I say, if a life carries the burden of human inviolability, it should also be granted a modicum of human aspiration. I may lack religion, but I have beliefs. One is that death can equal mercy in a situation where suffering is the central theme.
Proto-parenting was now the most formidable of Gordian knots: one still knotting itself, deepening its own complexity, and bound by flesh and blood to the core of an indispensable person. We were already triangulating on the needs of three people: Could the child be functional enough to be happy, with a modicum of comfort? How would that measure against my own resentment of a lifelong burden for us all, or against my wife’s resentment if I vote to end a pregnancy that she is unwilling to end? Call me whatever you need to; I’ve saved as many turtles from the road as the next guy.
We failed, in truth, to draft a detailed agreement over conditions warranting abortion. While we are both politically “pro-choice,” Heather’s line is clearly drawn closer to pro-life than mine. Luckily, better (if indecisive) news began to trickle in—most organs shaping up, proper head-to-body proportions, measurements galore “in the normal range,” the favorite phrase of cautious encouragement from Team Prenatal.
At one point, we went through a period of information stagnation. After their initial, stunning pronouncements, our doctors became masters of the noncommittal. Dr. Billy Bob remained quick on the draw with laser-precise statistics, but holstered anything resembling positivity. Our soft-spoken genetic counselor offered sensible timeframes and testing options (and to anyone looking for political fuel, there wasn’t any— “abortion” and its euphemisms seemed nonexistent, though there were times when it hung over us like a shadow, and I wished someone would just say the word). We met with our surgeon-to-be, taking heart from his no-nonsense gumption and his Greco-Roman wrestler’s physicality. We met the heads of the Neonatal Intensive Care Unit, first a lady like your dream of the perfect kindergarten teacher, then an Indian man as tall as Paul Bunyan but otherwise very much the opposite of a lumberjack, with lush, aerodynamic hair and “a quarter-century of experience” in all things baby. All were helpful, comforting people, but their answers to any real questions were predictably vague, hinging often on the phrase “every baby is different.” One could tell that they were trained, either by schooling or experience, to be on guard against dispensing false hope—slippery in the highest sense. Litigative shyness aside, no one can navigate the impossible for you.
In the hinterlands between dread and hope, wishful thinking abounds. If you want people to pray for you, put a troubled fetus into play. People will pray. You only have to decide what that is worth. Even if you are a godless castaway like me, my advice is to accept. Their hotline to heaven may be as productive as burping down a well, but it’s free, and if you can’t stomach an irrational expression of goodwill, you might make the dreariest, most Santa-killing parent ever.
Peanut, rutabaga, grapefruit… as our baby grew through the many produce-themed size comparisons, our personality traits held fast. Faced with problems, I, like the horse in Animal Farm, will work harder—though not always on things that really matter. Some of Heather’s anxiety manifests in OCD subroutines that can border on the occult. When I recently took over the vacuuming chores, I discovered that the wincingly stale remnant of Sprite in a plastic bottle that I picked up and gulped down in mid-sweeper sweep, was apparently some sort of talisman: “Oh no!” she said, “that’s been there the whole pregnancy!” I guess I broke some kind of spell. But if the prayer people get credit for good turns, then I should, too: not only did I drink the OCD Sprite, but each day, I review the “Healthy Bibo wish collage stuck to our closet wall.
During the pregnancy, Heather has googled herself ragged, even against doctors’ advice. After months of daily worry workouts, she has a midwife’s expertise in gestation. I realize we fit certain stereotypes: I, the male “fixer,” and she, the planner and talker. But this equates to more than simple personality type or gender trope. It’s biological proximity—the baby is not inside me, and I am not chemically programmed to protect it. I only feel it when my wife takes my hand to her belly for some of the more inspirational wiggles and bonks.
In these final weeks before the birth, the tide has mostly turned in our favor. An early apparent pinhole in the baby’s heart went away, and a portion of the extruded organs actually migrated into the abdomen on their own. Body weight reached the normal range, and energetic fetal kung-fu is a constant. But we still have anxiety to burn. Intensive care will likely measure in the months. Infection lore became reality when my mother-in-law contracted MRSA. Just yesterday, I brought my wife to a trickle of tears with a cartoonish speculation on prepping the baby for surgery with a tiny little spoonful of anesthetic. I know I’m a jerk, but all I want is a baby who can someday call me one.