The Baby After the CMV Baby
My husband and I always knew we wanted a third child, even after our second daughter, Anna, was born with congenital CMV. Even though Anna’s needs (deafness and motor delays) require more time spent in therapies and doctors’ offices than we ever expected, Luke and I both came from bigger families, we wanted to gift our daughters with another sibling, and, I have to admit, I wanted another chance at a typical experience of pregnancy and motherhood.
Of course, I wasn’t so naïve to believe that our third child would be born without any specific needs of her own, whether diagnosed or otherwise. I thought of my friend whose first daughter was born with congenital CMV, whose second daughter was born typical, and whose third was born profoundly deaf due to a genetic mutation she and her husband never knew they had. Or, Rachel Coleman, the founder of the instructional sign language program Signing Times
, whose first daughter was born unexpectedly deaf and whose second daughter was born with Spina Bifida.
Because most of us special needs moms spend our days in schools or therapists’ offices where children have all shades and shapes of hurdles to overcome, we see that having a typical child—or having a child at all—is a miracle in itself. I guess I wanted another miracle.
We also knew that if we had another baby, the possibility of CMV recurring again was close to impossible. After calling doctors and researchers across the country, I found no documented cases of a mother having subsequent pregnancies that yielded one symptomatic CMV baby after another. Statistically, I had a .01% chance of having another child with congenital CMV.
But every mother to a child with CMV has given birth to the 1 in the statistic. I still feared having another baby like Anna.
While I wouldn’t change a single thing about her, I also knew that I didn’t want another child of mine to lose anything to the same disease I wished I could have protected my daughter from. This is the paradox of loving our children with impairments due to preventable, contagious diseases: we have to advocate for our kids by campaigning that no more babies be born like them.
* * *
I got pregnant when Anna was 18 months old. I assumed I’d have a less stressful pregnancy after Anna because I felt I’d already checked the biggest box for the things that can affect a baby in-utero. But I found out quickly, I was still as nervy as ever when pregnant with our third.
I knew there was a possibility I could catch a different strain of CMV (though, in a typical pregnancy where “reinfection” occurs, there's only a 1% chance of the virus transmitting to the baby). Still, Anna’s challenges stood in front of me as a reminder of how careful I should be: during my pregnancy, she was hospitalized for another virus her tiny body couldn’t seem to kick. We lost one of her $12,000 cochlear implants. And on a daily basis, through the particular and racking misery of morning sickness, I struggled to make it to her four or five weekly therapies to increase her muscle tone, fit her for foot braces, teach her to speak.
So with Anna’s complications in mind, I never kissed my kids near the mouth, I worked hard to avoid the toddler’s rogue sneeze, I tried to keep my water bottle out of the 5-year-old's reach. I did get the flu and after googling the incidence rate of birth defects due to a high fever, I realized something else about getting pregnant again. My anxiety wasn't really about contracting CMV again. Its root was a pervading skepticism: if doctors had never warned me about CMV—this most common of childhood disability-causing diseases—what else was lurking, ubiquitous and dangerous and unnamed in our household?
I washed my hands like a mad woman, used multiple wipes on the shopping carts at Target, pumped out hand sanitizer any time I passed an automatic shooter-outter in a doctor’s or therapist’s office. (To the point, my girls have a mild fetish with the stuff now, which they call “handsitizer.”) I wasn’t taking any chances.
* * *
When my 20-week anatomy scan revealed that my third baby was somewhere near the 50th
percentile in weight and didn’t have any abnormalities with her organs, I was both relieved and a bit saddened to know that this was how I could have grown Anna inside me, had CMV never existed. And when the baby was born this fall, when her head turned on my chest because she heard my voice saying her name, Naomi, I thought of Anna immediately: how she came out silent into a world of silence, how she was born fighting something as soon as she left me, how she has had to know this world differently from the first second she entered it.
Predictably, we received push-back in the hospital to test Naomi for CMV. But when I insisted, when the pediatrician caught Naomi’s urine in a tiny bag and called me later that day to tell me it was negative, the visceral relief of this statement was of similar magnitude to the visceral dread I had when I got the call that Anna was positive. It occurred to me that I appreciate everything each of my children achieves more than I would have if I'd never had a child with CMV.
Naomi has exceeded my hopes about having a child after Anna. Our oldest gets to experience the blessing of a baby who doesn’t have to get shuttled to hospitals all the time, or a mother frazzled by what I believe to be one of the most stressful diagnoses a parent can receive.
And, Anna adores her. She insists on calling her “Nay-oh-Mary” instead of Naomi, a name which we all now use. She works with her OT on changing the baby’s diaper. My favorite thing is how proud my girls are of each other and their differences. In the same way my oldest has always loved to point out Anna’s cochlear implants and demonstrate for those who are curious, now, when we’re out with the baby, Anna announces proudly and adamantly to strangers, “That’s MY SISTER!”
Category: "Parent Perspective"