Every morning when I wake up, the first thing I do is I listen. This is a different kind of listening than I did a year ago. I hear the ravens clucking on the roof, the light scratch of rain on the window screen. This is the soundtrack of where we live during fishing season: a small island in Alaska where my husband fishes for salmon four months of the year.
I hear my 4-year-old, Zaley, breathing deeply in the room closest to mine. Then I hear my 20-month-old daughter, Anna, who is deaf. I listen to the vowels of her voice, calling to me in tones she cannot hear.
Anna was born profoundly deaf and has gross motor delays because of a pervasive virus I’d never heard of, but caught while pregnant, called congenital CMV, or cytomegalovirus. It causes more birth defects in the United States than any other nongenetic disease; an estimated 30,000 babies each year here are born with CMV, of which about 8,000 will have permanent impairments.
CMV is contagious, and it was most likely living in the mouth of my first daughter, without causing any long-lasting symptoms, when I was pregnant with my second. The virus is prevalent in day care centers and preschools, and toddlers can shed it in their urine and saliva for two to three years.
In the darkest of our rooms, I ease my light-sensitive child up from the crib. Then I bring her into the white of the morning, a bright fog threading its way from the sea up to our windows. Gently, I slide the sound processors of Anna’s cochlear implants above each of her ears, where surgically embedded magnets latch onto radio waves and transport sound into her brain. Before she was born, I had never heard of cochlear implants or CMV. This is our world now: navigating between sound and silence, still wondering how our daughter’s condition has been kept so quiet in a country where it has existed for centuries.
We live in more noise in the off-season, in Denver, where I had all my prenatal appointments. My pregnancy was unremarkable besides a mean bug in my second trimester that also afflicted Zaley. It may have been CMV, but I’ll never know now.
We lounged around for weeks, watching “Frozen,” eating toast, drinking from whatever cup was closest to our hands. My OB told me not to come in until I was feeling better.
At that point, I already knew the results of the routine screening every pregnant woman undergoes; I had tested negative for hepatitis B, hepatitis C, syphilis, H.I.V., rubella, chlamydia, and genetic diseases like Down syndrome and cystic fibrosis. Even though the likelihood of having a baby with congenital CMV is higher than for all of the above conditions put together, I was never tested for it during either of my pregnancies.
Now I rewind in my head, playing out a different scene: At my first prenatal appointment, I ask for a CMV test. I find out I have no antibodies for it. I’m instructed to do some very simple, preventive things during pregnancy (the only time CMV is dangerous): Kiss Zaley on the head instead of the mouth, pour my own glass of milk instead of finishing hers.
Would I have been diligent enough to have avoided Zaley’s every cold while I was pregnant? Probably not. But because having a child with special needs will clarify all the ways you could possibly have protected her from a more complicated life, I believe I would have washed my hands after wiping Zaley’s nose, used my own forks and spoons.
This is the type of mental time travel you do when you have a child with congenital CMV. Everything hinges on one fact: To protect your baby from CMV, first you have to know that it exists.
I gave birth to Anna in Colorado while my husband was fishing in Alaska. She was born full-term, but five pounds and silent. When I looked into her black eyes, I saw an urgency, a beseeching. Our pediatrician in Denver was astute. Maybe he saw it, too. At her 10-day visit, he ordered a CMV test, and the nurse caught Anna’s urine in a little bag she called a “potty purse.” I flew to Alaska with my girls the next day. When we received Anna’s diagnosis by phone, she was 2 weeks old. We immediately ordered the aggressive antiviral drug that Anna would take for six months to preserve her eyesight and cognition — a drug that must be started during the first three weeks of life.
In Alaska, we live in a town called Sitka — a seaside community of about 8,000 people where rain forests tangle up steep mountains and wooden boats knock against the rocky shoreline. If I wanted to picture how many American children are afflicted with lifelong disabilities from congenital CMV each year, it could be represented by almost the entire population of Sitka. That means the workers and shoppers in three grocery stores, the people going to two movie theaters, the entire staffs of the Coast Guard base and two hospitals, the congregations at 15 churches, the hikers, the artists, the trollers and long-liners and sport fishermen — every man, woman and child would be deaf, blind, immobile or dead every year that we return to Sitka.
The hardest part about CMV for me hasn’t been all of Anna’s needs; it’s been the widespread lack of recognition of something so huge, so damaging, so here.
When we returned to Alaska this past summer, at Anna’s 1-year checkup, the third-year resident on rotation from the University of Washington — the nation’s No. 1 medical school for primary care — had never heard of my daughter’s virus. When I meet a child with “undiagnosed” hearing loss or mobility issues, I wonder if he or she was born with CMV.
Returning to Alaska makes clear how much we have grown from the initial isolation of a condition that few know by name. Because of our weekly movement therapies, Anna started crawling last summer at 14 months. Because of her cochlear implants and our weekly auditory-verbal therapy — which involves me deliberately adding language to everything we see and do — Anna pointed at a salmon and made the sound swish-swish.
I am Anna’s constant narrator. I tell her everything about the world, which will eventually include telling her about CMV — a disease that is everywhere, that still needs a voice, that has changed the way we listen, that has changed every word she will speak.