Her Baby Was Born Deaf Because Of CMV & She Wants Pregnant Women To Know What She Didn’t
CMV is typically harmless, but can be dangerous for developing fetuses.
When Megan Nix’s newborn fails her hearing screening, doctors don’t panic. Anna is a beautiful, alert, 5-pound baby who probably just has fluid trapped in her ears. But Megan can’t shake the feeling that something is different for her secondborn, whose veins are so small the nurse can barely gather a pinprick of blood from her heel. By the time Luke, Megan’s husband, arrives at the Denver hospital from Alaska, where he works as a fisherman, Anna has failed her second hearing test.
Days later, Anna’s pediatrician suggests a simple urine catch to test for a “little-known virus” called congenital CMV, which can cause hearing loss and smallness. “Unless you’ve heard of CMV, you will not Google CMV,” Megan writes. Most people infected with cytomegalovirus — and over half of adults catch it by age 40 — don’t show any signs of it. But if a pregnant person contracts CMV through contact with an infected toddler, as Megan did, the virus can have any range of effects on the developing fetus, including deafness, blindness, epilepsy, and even death. But why was she never warned? Why didn’t her OB-GYN mention that simple measures, like extra handwashing or not eating off her toddler’s plate, could help keep the baby safe?
Nix’s new book, Remedies for Sorrow, is a work of advocacy that illuminates the ways in which powerful systems can disregard what is true and prudent in the name of productivity and tradition. But it’s also a carefully crafted memoir, with Nix’s tenderness, grief, and love always humming beneath the words on any given page. I talked to Nix by phone, just days after she’d lost her mother, as she cuddled her fifth and youngest child, two-month-old Lizzy, against her chest. We discussed a mother’s intuition, the challenge of living between Colorado and Alaska, her hope for the future of medicine, and, of course, how Anna is doing now.
When we meet Anna as a newborn in the book, she’s small but OK. You write, “There’s no red flag except the one inside my sternum.” There’s a feeling or knowing you have as her mother.
Yes, I think we have that, and I think we’re taught to silence it. Like Don’t worry about anything, everything’s OK. That can be true sometimes, but often it’s a way of falsely reassuring people, which can be minimizing. Anna was symptomatic. She was SGA (small for gestational age). There were just really interesting things, like her awake-ness was really peculiar to me, having already had a child. But when voiced over and over again, there should be some credence given to a mother’s heart. I didn’t feel that was looked at closely enough, and no doctor stopped and said, “Do you feel like something is going on?” I would’ve said, “Yeah, I do. Can you stop for a minute?”
I’ve witnessed with my mother’s death that the hospitalist model for both children and adults is not very effective at listening. The hospitalists come in for, like, two to five minutes, and you feel this rushed, burdensome feeling of, “Can I just say one more thing before you’re literally walking backwards to get away from me?” When a doctor really does slow down, there’s palpable relief in that. It’s far too rare.
On that note, do you think the practice of narrative medicine, which centers patients’ stories and perspectives in health care, should just be medicine?
Totally. I think humans, by nature, do want to slow down and talk and listen, but because a lot of our models are set up for the opposite, which is to crank out sustainable ways of running expensive businesses, that overrides our innate desire to deeply connect. It’s really unfortunate.
Medicine, in general, has become such a business. Med students learn how to be efficient and competent in place of being trusted deeply and being vessels of our stories and truths. I don’t have statistics but just know doctors who have changed their models and changed their approach, including our pediatrician’s office. They are able to practice medicine in a much more rewarding way for themselves and their patients. Even if you don’t change your entire practice, to just approach patients with the mindset that they’re a whole person, not just a list of symptoms, could be helpful.
What was your reaction to hearing “CMV” for the first time?
“We don’t have that. We’re healthy. I would have heard of it.” It’s sort of an elitist response, and I regret that. I didn’t know much about public health. I was just ignorant entirely. I thought it was something like strep.
To his credit, our pediatrician told me the truth, but he didn’t overload me with details that would have been too much for me to handle. That’s the sign of a really good doctor — being respectfully transparent, in a way I could still research on my own but wouldn’t fall apart in that appointment, thinking she might die. He gave me enough information for me to take into my own hands, and I think that’s a good lesson for the CMV conversation.
Once you learned Anna had CMV, you still faced so much unknown. Did you find yourself completely immersed, doing a deep dive for information, or did you put limits on the time you spent searching the internet?
It was more of a deep dive. Before we got results back, I remember saying to Luke, “This is possibly one of the worst diagnoses a parent can face.” It was like: Here’s basically every progressive symptom you can think of, and no real guidelines for how to navigate them in relationship to the initial catalyst, which is CMV.
I knew to go to the medical studies because when you Google, you find these really pat descriptions by major medical and public health societies that begin with CMV is no big deal, essentially. You really had to click around to find congenital CMV, and even then, it would reassure you most babies are fine. But 20% are not. That’s a lot. And it’s a public health issue.
So I had two types of research. I was researching how Anna would turn out, which was an illusion, but you grasp for that. And the other part of me was looking for experts to explain the absence of CMV in public discourse and readable literature.
Would you say the world of medicine is still dismissive of CMV?
I think it’s getting better, but I still have to stop doctors who are like, “Oh, that’s so rare” or “We’ve never seen this.” There’s still a drastic lack of education around it in medical school. I think there’s a dismissal of even the prospect of looking at CMV just because it’s about pregnancy, and that’s not only hard because people don’t want to make their fetuses guinea pigs. It’s also hard to convince these longstanding, old, male-populated panels that this is something worth looking at again. It’s really important for people to tell the intimate CMV stories, and that’s why I wrote the book, because that’s what narrative does.
We see so much of your husband Luke’s steady personality and perspective as your lives change unexpectedly. Did you always know he’d be such an integral part of this book?
I feel like he’s the hardest person for me to write about, because he’s just a super good guy. He’s a foundational part of my everyday enduring. Of course, he frustrates me and we get into arguments, but I don’t know how I would have weathered Anna’s diagnosis without his real acceptance of difficulty in life. And same with my mother’s death — he just allows for suffering to be without needing to tell me it’s going to be totally OK. He did say, “No matter what, we’re going to love her,” but it’s a different kind of assurance. It’s a realistic assurance that he has always given me.
Place is more than just a detail in your story. As a fisherman, Luke loves Alaska, and you love Luke, but you clearly don’t love Alaska. And you don’t hide that tension from us. It’s as though the landscape of Alaska, where you spend part of each year, mirrors the loneliness you can feel parenting a child with CMV.
It’s very much the largest tension in our marriage. In a way that I can’t change, I resist being there. I’ve thought through it, I’ve planned more child care, he’s planned more days off, we’ve had nannies, and still, it’s just this difficult place for me. It is gorgeous. I don’t want it removed from my life entirely, and yet, it’s just not my place. I have this anticipatory grief, even in April and May, that everything about our lives [in Colorado] will come to a screeching halt, and we’ll go up there where it’s difficult. Yet we have really close friends there, and it brings something to our lives that most people do not have, which is slowness, a sort of healthy confinement.
He usually works seven days a week, and that’s just really hard for anyone, much less when you don’t have family there and you live on an island. So this will be his last fall professional fishing season.
You also don’t want to make a person feel guilty for something that you really can’t do anything about. For the last 11 years with kids, financially, he’s needed that work, and so have I, to have the flexibility to write.
I love how you refer to yourself in the book as a mother and sometimes-writer, someone who writes in seasons. I didn’t read it as a devaluation of your role as a writer, but more so an honest reflection of how you give yourself to what and whom you love.
Totally. Thank you, first of all, for noticing that. I think motherhood is minimized. We’re afraid to not be career women, but we’re OK to downplay that motherhood is our primary activity? No matter if we’re working full-time or not, mothering is the hardest thing ever. I’ve had a lot of jobs, and it is the hardest, but we can’t lead with that? I’m proud to put that first.
Especially now in a season of grief, everything is on hold. Yet, I do find ways, when the impulse is strong enough, to do things that are out of season. When my mom was very sick and I had a newborn, I’d write one-handed on my cellphone in the Notes app when I woke up to nurse. Details just dissolve, especially when you’re busy, and I would have lost so many of her last days to natural memory loss, but I didn’t.
I don’t even know when I wrote the book about Anna. I still don’t have time to write another book. But I sloppily fit it in and know that eventually the season will come when I can organize and edit it. The older I get, and the more kids we have, I just accept that differently, with less anger. I don’t feel short-changed by my loss of time or my seasonal surrendering. Alaska has taught me that, too. You can rail against whatever circumstances life puts into your schedule, but it doesn’t really help.
Your faith feels important to this story, but it never comes across as “preachy.”
It’s an integral part of my life, but it’s also a subtle part of my life. A lot of Catholics are not very evangelical by nature, and some would say, “You should be talking about God all the time.” But I just don’t find that to mirror the way that faith is. There’s a ton of doubt, especially when the reality gets hard. Even with my book, I had this kernel of faith that it would become something, and it was rejected heavily. Like it should have been dead in the water. Luke kept saying it would get published. It would make me so mad, like, “How do you know?” And he’d say, “It’s good, and this is a true story that people need to hear.”
That’s my version of faith — just this little pebble that’s unshakable, and it’s there. Mysterious and quiet.
How is Anna doing now?
She’s just remarkable. As I’m sure any parent of a child with CMV would tell you, she is a super perceptive, mysterious human being to us. She’s in second grade and an excellent reader. She loves to sing. She also horseback rides, which is interesting because I never impressed upon them a need to do something that I loved. There are a lot of subtleties between silence and vocal cues on horses that are confidence building for her and innately similar to her way of being — like feeling things with higher sensitivity when her ears are off, or when she has to balance differently than kids who are larger than her. She’s well aware of CMV and her deafness. Just by nature, she’s very logical, and she’s not self-conscious at all. Today are auditions for the talent show, and she’s singing an Orthodox song, “The Eyes of All Look to Thee.” We’re like, “Awesome, go get it!” She’s just a really happy, energetic child.
Remedies for Sorrow: An Extraordinary Child, A Secret Kept from Pregnant Women, and a Mother’s Pursuit of the Truth is available now.