A GENESIS | Victoria Johnson
At eight weeks, I had already fallen in love with the first black and white flickers of my baby. The white tadpole-ish squiggle, existing before only in my imagination, had suddenly become a fully dimensional being.
Later, during the 20-week anatomy scan, he had yawned, which is probably as adorable as blurry, two-dimensional pictures get. Afterward I sat in the driver’s seat with the photos on my lap, trying to choose a favorite to send to my family, excited to tell everyone about his yawn. Before I’d even started the engine, a note on the MyChart report appeared saying his right kidney wasn’t visible, and I recalled the tech asking me when my next doctor’s appointment was.
We had experienced a false alarm before during my first pregnancy, a false positive screen for Trisomy 13 that was ultimately disproved after amniocentesis and chromosome analysis. So this time, we had decided not to become too worried about the possibility of renal agenesis until a more detailed scan at the maternal-fetal medicine clinic could be done.
At the MFM clinic, the ultrasound tech announced to the screen, “Some babies just have one kidney,” her chirpy voice ripping through the quiet room. My husband and I were silent.
Now, at 22 weeks and five days, after hearing the MFM ultrasound tech’s confirmation, it was clear something was really wrong. Was it just the missing kidney or was this the first clue of congenital defects?
We were shuttled to a small room. “Could be VACTERL,” said the genetic counselor. I vaguely remembered that from my pediatrics clerkship. As I recalled, it was one of those “garbage can” diagnoses, a diagnosis of exclusion, like a collective throwing up of hands (they can’t even agree whether to call it “VATER syndrome” or “VACTERL association").
“Could also be something genetic…do you want to see the doctor?” she asked. I felt myself nodding, and we were deposited into yet another small room, facing a wall with shelves lined with textbooks.
The MFM doctor said, “If you had to choose one [congenital defect], this isn’t a bad one to have.” I have an all-too-vivid memory from years ago of telling a patient that if she had to choose an acute leukemia, this is the best one to have. She died a few weeks later.
“Do you want to have an amniocentesis?” the MFM doctor asked. In what I thought was my best matter-of-fact, doctorly voice, I asked how the results would change management (I would later read in my chart that I “appeared to be in shock”).
“Let me ask you this,” she replied, “is there any situation where you consider an elective termination?” We had not discussed this possibility, choosing to believe we would be worrying ourselves for nothing. Now we looked dumbly at each other. Was it even legal? If so, would we?
The baby kicked in protest. Then our son’s daycare called. He had vomited, a Class A Covid symptom, and could we please come pick him up?
Back home we had halting, toddler-interrupted, conversations. While making spaghetti, my husband became tearful: “What if I can't do it? What if we are taking care of a toddler for the rest of our lives? Or what if I can do it but I can't be happy?”
Why had I lobbied for a second baby?
At a follow-up visit, the spine was cleared, then not cleared when, after looking again, it possibly has some “kinks.” And again: “Do you want an amnio”?
I felt like a blue whale, mouth gaping in astonishment, propelled along by the whim of the current, taking in plankton-sized bits of information that seemed to float randomly my way. But the bits didn’t coalesce into anything helpful in my grasping effort to define the extent of what was wrong. So much was awful mystery, and my mind spun wild webs of cause and effect in desperate attempts at both explanation and future-telling.
I found myself intermittently crying at the TV, at phone messages, at the Internet, in the hospital bathroom at work when my general OB called to check on me.
Was this a kind of cosmic retribution for every medical mistake I had ever made, and my baby was paying the price for my sins?
In the waiting room at the prenatal diagnosis clinic, I wondered what might be lurking in the bellies of the other women there, or if they even knew the diagnosis. I supposed we were all there seeking out the dark secrets hidden in the depths of our wombs.
I suggested, to the MFM fellow and attending, the possibility of VACTERL as a name for the baby. No one except me smiled, probably because it was not funny.
Was it my accidental radiation exposure in the trauma bay as a medical student?
The more medically inclined of my social bubble tended to be inexplicably moved by the news to a well-meaning, informed celebration of sorts, a sunny chorus of “well, you only need one kidney!”
“Yes, thank goodness!” I gamely tried to join in, not wanting to be a party pooper. But instead, I felt I was falling into a chasm opening up between us. One day I did finally bark back: “But my baby was supposed to have two!” The phrase ‘congenital anomaly’ is something no parent ever wants to read in their child’s chart.
“Hooray!” They all cheered when the fetal echocardiogram was normal.
There was a more confirmatory diagnosis of a curve of the spine. Still, the MFM doctors were not sure whether he had VACTERL, since some of the abnormalities, like tracheoesophageal fistula, may not be seen reliably on prenatal ultrasound. I wondered how they made heads or tails of anything at all with a one-pound fetus curled up in ever-changing postures underneath layers of tissue and fluid.
The pediatric nephrologist confided that he didn’t know for sure how many kidneys he had. I realized I had always taken it for granted that I had a pair. I remembered a patient who had three kidneys–what an unnecessary bounty of filtration!
Why did I do those night shifts?
There was a meandering quest for a syndromic explanation. Was there some untold story tucked away in our genes (much preferred, as opposed to “maternal factors,” like my “advanced maternal age”)?
Our families had scoliosis but no kidney issues. There were some minor ear anomalies–a few of us on my side, including me, had ear tags–which might be related to kidney development. I found myself searching through articles like “Syndromic Ear Anomalies and Renal Ultrasounds,” but it was largely unhelpful. Maybe something, maybe nothing.
A biochemistry professor once said: “Some things we know; the rest is just magic.” Just not always like Disney magic.
Why didn’t I go in sooner for the fever I had early on?
More ultrasounds were needed to confirm he had enough amniotic fluid, and detailed measurements were taken on the amount of black, a color that either sucks up all others into nothingness or accentuates them. Each time there was an increasingly tedious search for the other kidney, like when a ship is lost at sea or when someone goes missing.
A smiling older woman with a kind of faraway exhilarated gleam in her eyes told me she thought labor is the greatest adventure anyone can have. I didn’t tell her that I’m not much of an adventure type.
Why did I take that azithromycin when I was already getting better?
In the chiaroscuro-inspired lighting of the delivery suite, we took bets on when he would come, and everyone wrote their guess on the whiteboard. The NICU team huddled in a dark corner like awkward understudies.
It’s funny to think of being on a great adventure when you are lying there like a belly-up turtle, medically numbed to the experience. As I pushed, I stared up at the paneled ceiling, glad the surgical light was focused elsewhere as tears streamed quietly down the sides of my face.
After months of living in a hazy limbo, our questions were about to be answered. Although now that we were so close, I wasn’t sure I wanted to know.
Were we ready for whatever lay ahead? Were we all going to be OK?
When our baby dove out into the world of untethered gravity on a wave of seeming inevitability, my husband, the only one without any medical background, won the time-of-birth bet; the baby passed his initial Apgar inspection and the NICU team quietly retreated.
And then there was my son splayed out in full flesh-y color and flecks of vernix, an almost weightless warm lump on my chest, his two perfect-looking, blue-gray eyes blinking slowly to some primordial rhythm into the bright light now shining on both of us. I watched as his eyes roved around with what appeared to be a carefree aimlessness until finally settling on my face.
Suddenly, he looked stunned, his tiny mouth agape, as if he’d either seen a ghost or the sparkling, glassy surface of the ocean for the first time. Of course, with his infant vision, he could, at best, only see as far as my face, and only that in black and white. But instinct seemed to be telling him to ask this face, “Who are you? Who am I? What are we doing here?”
I just hoped that whatever he found there, regardless of what might eventually come to light, it would be enough.
Victoria Johnson is an internal medicine hospitalist physician at the University of Illinois in Chicago. She teaches health humanities.