Unless you’ve heard of CMV, you will not Google CMV.
I first hear the letters when my second daughter, Anna, is 10 days old — when she weighs only four pounds, is mostly silent, and hasn’t yet passed a hearing test — and our pediatrician suggests we test her for a “common but little-known virus” I may have contracted in the last nine months. He does not mention that CMV causes more birth defects and developmental delays than anything women are tested for during pregnancy.
The test our pediatrician offers for CMV is a noninvasive urine catch, collected in a clear bag attached with easy-peel tape to a baby’s hips. It is pain-free and fast. And so, I say yes.
While I wait, I ask the pediatrician if CMV is like the flu or something and will pass. I don’t know anything yet. He says no, that it will stay in Anna’s system forever like chicken pox, but if she tests positive, she can start an aggressive antiviral to stop any progressive hearing loss or viral activity in the brain. But she must start it in the next two weeks. He also explains that CMV wouldn’t have harmed me during pregnancy, but it might have caused my baby to have challenges because she was in the midst of development. He is serious, eyes on mine. I can feel a new gravity enveloping my life.
I will not find the haunting spectrum of CMV and its historical silence in medicine until later, online. But I can tell, in the weighted quiet my daughter and I now share, that what we are facing might be larger than I know.
As a species, we are both impelled and dissuaded by tone — the tone of our mother’s voice, the tone of a song we are hearing, the tone of the content we read. And so, when I get home from the pediatrician and start researching CMV, I believe the calm, non-urgency of the CMV information posted by agencies like the Centers for Disease Control and Prevention.
The website benignly explains: “Over half of adults by age 40 have been infected with CMV. Most people infected with CMV show no signs or symptoms. When a baby is born with cytomegalovirus (CMV) infection, it is called congenital CMV.”
But elsewhere, the Mayo Clinic’s website adds, “If you’re pregnant or your immune system is weakened, CMV is cause for concern.”
The word concern feels contagious, as though reading it creates the feeling itself. But when I scroll down, the language again becomes murky, noncommittal about CMV’s impact. “A few babies who have congenital CMV who appear healthy at birth develop signs over time,” it reads. The phrase a few seems untrustworthy, and I quickly realize it does not connote the truth, which I find easily when I enter the right words.
In actuality, one in 200 babies born in the United States has congenital CMV. While four out of five infants will be mostly unaffected by the disease, the children disabled by congenital CMV actually outnumber the children disabled here by any other congenital disease, including Down syndrome, spina bifida, cystic fibrosis, and pediatric HIV.
Now, my ears are hot and I’m on high alert, seeking medical articles written by infectious disease experts — and in these pieces, I find an entirely different tone, one that is not at all dismissive but imperative that more must be done to acknowledge, identify, and treat CMV. Phrases like global public health crisis and a pregnancy epidemic, largely ignored leap out.
Congenital CMV can cause not only hearing loss, I learn, but also blindness, cerebral palsy, epilepsy, autism, and early infant death. These words need no tone to land on me with a dark, unrelenting heft.
I think back on all the packets I’d read at my obstetrician’s office. All the conversations we’d had about other, less common diseases during pregnancy. Immediately, I wonder what every parent facing a diagnosis of congenital CMV thinks: Why hadn’t I been told?
It has taken me nearly eight years and hundreds of interviews with pediatricians, infectious disease specialists, and medical bioethicists to answer that question fully for myself. For one, around 90 percent of infants with congenital CMV are never diagnosed — their symptoms will most likely never be linked to congenital CMV; they’ll be labeled later in childhood, identified as their own separate things. Second, CMV has been consistently misunderstood by medical students and even prominently published doctors since the 1950s, when it was identified by two Nobel Prize-winning doctors. And, finally, the American Congress of Obstetricians and Gynecologists does not recommend that obstetricians counsel women about the disease, despite the fact that one in three toddlers has been infected with CMV — meaning, they’re most likely asymptomatic with CMV but also contagious with the disease.
These children are fine, I understand, because they aren’t fragile, still-blooming fetuses, just as our pediatrician had said. The problem is that toddlers, like my 2-year-old, have mothers. Mothers who might be trying to have their next baby and shouldn’t come into contact with CMV. Better yet, parents should be told by their obstetrician to avoid CMV during pregnancy by not finishing their toddler’s snacks, sharing a toothbrush, kissing them on the lips. (CMV isn’t airborne but transmits by direct contact — fluids going in your mouth.)
Curious if a toddler is contagious with CMV for a week or two once they’ve caught the disease, I ask the Internet how long toddlers can excrete CMV. I find an American Academy of Pediatrics study stating that toddlers can “shed” CMV contagiously in their saliva, urine, snot, and blood for months, even years.
But at my 20-some prenatal appointments, accompanied by a child who used my ChapStick, sipped from my water bottle, needed me to wipe her nose, I had never been told.
It is both consoling and devastating to know that I am not alone: Surveys in 2015 and 2016 found that the vast majority of women in the United States — 91 percent to be exact — don’t know congenital CMV exists.
I stop reading to watch something else that’s happening on the edges of my screen. Around its perimeter are ads for pregnancy: Land of Nod bookshelves lining a laughably white nursery where poop must not exist; a crib that can play a recording of a mother’s heartbeat and guarantees 30 percent more sleep for the newborn at night; a photo of a glossy-haired pregnant woman in a wheat field, both hands on her bump, leaning down to kiss her toddler on the lips.
I can’t even tell what item the last picture is trying to sell — maybe an impossibly benign version of life, as advertisements do: no food smears on sweaters, no primary colors. Obviously, no existence of CMV.
I remember the me who had never been pregnant, who believed I would be like the woman above — barely weakened by childbearing or child-having. In the first weeks of pregnant thrill, I believed the lies I saw online: that pregnancy and baby-holding could be a pastoral experience if I approached it as such through the right birth plan, wallpaper, and baby equipment.
More than that, I quietly believed that through willpower and strategy, I could have a perfect pregnancy, and later, a perfect human being.
It didn’t take long though, during my first pregnancy, to feel shamed by the images I’d once believed could be me; by eight weeks, pregnancy for me was the opposite of serene. I was wracked by nausea and irritability and quietly terrified for the great upheaval that I knew lay in wait. I wasn’t even sure when I should tell people I was pregnant, because if I miscarried, I would feel ashamed for having announced that I would imminently present a baby, and then people would see that my body had failed.
I wanted to say to my audience, as the images of pregnancy had said to me: It’s going to be OK. This was an echo of the cultural tone I had absorbed: Downplay the difficult reality of pregnancy and parenting, look as perfect as possible, put up a reassuring façade.
In her beautiful memoir, “The Long Goodbye,” author Meghan O’Rourke writes about America today as a place that doesn’t expect or embrace the ongoing pervasiveness of suffering or grief. Her friend says to her, “There are many wonderful things about our culture, but I’m sorry, it is a phobic culture. People do not want to confront the existential mess that is life. They want to check things off — OK, you’re OK.”
People clearly don’t want to confront the existential mess of starting life either, I guess, if there’s no honesty about this ridiculously prevalent and proximate disease called CMV.
During my pregnancies, I’d been conditioned to fear everything — hot baths, kitty litter, blue cheese — and make it look like I feared nothing. In hindsight, I’d felt neither appropriately informed or supportively empowered. Instead, I’d spent all my anxiety and effort worrying about far less common conditions instead of the big one I could have learned to prevent.
I look down at Anna, who is sleeping in my lap while I research. I know she’s the same child she’ll be no matter the research I unearth. But I can feel a deep churning inside me, an impulse that will both plague and direct me for as long as I live. If Anna does have CMV, then her growth restriction in utero wasn’t just a random mishap during pregnancy; this was a serious upending of her development due to a dangerous, intentionally undisclosed disease. And as her mother, it will be up to me to tell the story, to state the three letters that most pregnant women still don’t know.
Megan Nix is the author of “Remedies for Sorrow: An Extraordinary Child, A Secret Kept from Pregnant Women, and a Mother’s Pursuit of the Truth,” from which this essay has been adapted with permission from Doubleday, an imprint of the Knopf Doubleday Publishing Group, a division of Penguin Random House LLC. Copyright © 2023 by Megan Nix.