"A Secret Kept From Pregnant Women"
Cytomegalovirus causes permanent disabilities in as many as 8,000 American newborns a year. Many obstetricians don't want to talk about it.
Megan Nix was early in the second trimester of her pregnancy when she and her 2-year-old daughter, Zaley, both came down with what she likened to mono, whose most prominent symptom is crushing fatigue.
"We'd spend days on the couch next to each other, watching Berenstain Bears and drinking from whatever cup was closest to our hands," she would recall. "I'm sure I kissed Zaley's snot-smeared face, finished her half-eaten toast; I was too fatigued to go get my own."
When she took Zaley to the pediatrician, she was told it was a bad virus. They were advised to stay home, rest and drink fluids. Zaley soon got better. But Nix didn't. So, she called her obstetrician's office. A nurse told her, "If you're that sick, then you shouldn't come in. You should call your primary care doctor and ask for some meds."
Looking back, she believes what she had was cytomegalovirus or CMV, a common, usually harmless virus. Unless you are immunocompromised. Or unless you contract it as a baby in the womb - congenital CMV - in which case it can be dangerous. It can cause a whole menu of birth defects. Physical stunting. Cognitive delays. Hearing and vision loss. Cerebral palsy. Autism. It is also the leading non-genetic cause of hearing loss and deafness in newborns.
Nix had never heard of CMV. It wasn't on the list of things she'd been informed to be alert for. It wasn't on the catalogue of communicable diseases to watch out for. Her obstetrician never mentioned it.
What she did not know - what few pregnant women know - is that 20,000 to 40,000 babies are born annually in the U.S. with cytomegalovirus. Between 6,000 and 8,000 of them will have permanent disabilities. Roughly 400 will die each year from CMV.
A pregnant woman can get CMV through a recurrence of a prior innocuous infection or from sexual contact with an infected person. But the CDC says the most common route of transmission is from the saliva or bodily fluids from a young child, which, in real life, means women with toddlers are especially at risk.
Megan Nix gave birth to Anna in a Denver hospital on June 19, 2015. She was extraordinarily tiny. Otherwise doctors pronounced her healthy.
But from the very moment she was handed her newborn in the delivery room, Nix sensed something was wrong.
"Everything is perfect except for the feeling that everything isn't," she would recollect. "There's no red flag except the one inside my sternum."
Like almost every newborn in America, Anna was immediately given a hearing test. She failed it. Her doctors and nurses said not to worry. It would probably clear up soon. It didn't. She failed the next hearing test and the next.
When Anna was two weeks old, Nix took her to her pediatrician for a check-up. The doctor suggested testing her baby for CMV because, he said, it can cause hearing loss and small size. It was the first time Nix had ever heard of it.
A few days later, she and her children flew to Alaska to join her husband, Luke, a commercial fisherman. While she was there, she got the call. Anna had CMV and a subsequent hearing test concluded that she was completely deaf in both ears.
After the diagnosis of congenital CMV, Anna was immediately put on antiviral medicine. It is important that a newborn get on these meds within the first month and Anna was just inside that window. She was fortunate too in that she would be able to get cochlear implants when she was 10 months old and their insurance paid for the operation (the cost is around $400,000).
But for Nix, the aching tragedy is that she and few women are ever told about CMV. They are not told how it's transmitted or what they could do to try to avoid contracting it. A survey found that fewer than half of OB/GYNs discuss CMV with their pregnant patients. In fact, in 2015, the American College of Obstetricians and Gynecologists changed its position and advised against discussing it, to avoid alarming pregnant women.
CMV prevention, the ACOG said in its bulletin to members, was "impractical and burdensome."
"Patient instruction remains unproven as a method to reduce the risk of congenital CMV infection," ACOG said.
But a 2016 New York Times article cited a French hospital study that found that pregnant women shown a video about CMV prevention and provided hygiene tips were far less likely to be infected with CMV than those who weren't given that information.
To Nix, the ACOG position is part of what she says is a terrible, intentional silence about CMV. So, she is now speaking out in a riveting new book about her experiences titled Remedies For Sorrow.*
I recently spoke to her about what she and Anna went through and why it is important to end that silence. Our conversation has been edited and condensed.
MN: Congenital CMV - CMV contracted before birth in utero - is just not discussed by obstetricians even though it's the leading (non-genetic) cause of birth defects So, really, the prevalence of CMV mixed with the silence is just such an unbelievable combination of factors that led me to write the book. I had never heard of it until Anna was born.
RC: When you were pregnant, you had a severe case of what felt like mono but we now know may have been CMV. What did you say to your doctors and what did they say to you, or not say?
MN: I called my doctor's office. I was around 20 weeks pregnant. I was looking for some relief because I had a toddler and I was really struggling. The nurse called me back and she said, 'Well, if you're that sick, you shouldn't come in,.' She should have said, 'Come in and we'll test you for some things.' One of which would have been CMV. Had they tested me, I would've found out that I had recent antibodies to CMV and they could've given me an antiviral during pregnancy which can, as some studies are revealing now, prevent the virus from transmitting to the fetus. If we had known then that Anna had CMV in utero, then the very day she was born, she could have been treated with an antiviral because she was symptomatic. They could have immediately stopped the progression of the virus in her brain. But I wasn't (tested for CMV). I don't think it ever came up on their radar to test me for CMV even though I had a mono-like illness and later it showed on ultrasound that I was measuring small and the baby's head was microcephalic. It was disproportionately small compared to the rest of her body. Still, no test for CMV. There was just an overall silence.
RC: In all your visits to your OB/GYN and pediatrician for your toddler, no one ever mentioned this as something to be aware of?
MN: No. Never. Even in my subsequent pregnancies, I've never seen it mentioned in the prenatal paperwork you get. They'll hand you a packet of things to look out for like kitty litter or lunch meats or unpasteurized cheese or sushi, CMV is never on the those packets even though toxoplasmosis (which can be transmitted from kitty litter) infects one in 10,000 babies and CMV infects one in 200.
RC: How do you account for that?
MN: It's complicated. Studies have shown that medical students have significant gaps in their knowledge of CMV, how it presents and if it's preventable. This is a big part of the silence. There is ignorance in the medical world. I also think obstetricians are wary to bring it up because they don't want to panic women. That's well-intentioned but it's not the right thing to do. The right thing to do is to give women information and educate themselves. Doctors need to educate themselves, first, in order to educate pregnant women and then say, 'This is what we know. This is what we don't know.' You can avoid the saliva of your toddler by not finishing their snacks, not using their toothbrush, by kidding a toddler on the head instead of the lips.
RC: The American College of Obstetricians and Gynecologists(ACOG) advocates not informing women because it might upset them unnecessarily.
MN: Right. I think that's just paternalistic. The ACOG says that information about CMV will be impractical or burdensome for pregnant women. But it's not their right to decide that. In various studies, a majority of women say they want to know. Blaming women and saying we can't handle the complex and inconvenient truth of CMV is taking away our right to know about it.
RC: You write very powerfully about this sense of - I'm not sure what the right word is - that something was wrong. This foreboding (after Anna was born).
MN: It's hard to articulate. There was just this sense that - because I had a healthy older child - that Anna was mysteriously different. There was just this feeling that we were not seeing Anna in her entirety. We were missing something.
RC: Anna's hearing was repeatedly tested. Finally, you are told she's deaf. I think the quote was that she could stand next to a jet airplane and wouldn't hear it. What did you think when you heard that pronouncement?
MN: That was very shocking. I didn't really see it coming. It is kind of weird that I didn't because she had failed all these tests and I had sort of started to listen to all these people's false assurances along the way. I just wasn't fully ready to enter the world Anna was preparing for me. At first, there was a lot of grief. But also, after the diagnosis, I felt that I really knew her for the first time, that part of her mystery was revealed to me and now I can move forward. I can learn sign language and consider the possibility of cochlear implants and each little piece of her puzzle could fit nicely into the grooves. 'Ok, I know you.'
RC: In your book, there is an undercurrent that sometimes bubbles to the surface that feels to me, as your reader, like anger or outrage. Am I misreading it?
MN: There was anger. I was careful not to make that the driver of the book because it wasn't the driver in my life. Hope was more of a driver than anger was. But I certainly was angry. When I read ACOG's statement to not disclose CMV to women, that made me furious. That felt deceptive. It felt like it stalled my agency as a mother. As time went along, I met other women who were fighting for CMV change. I think I admired the ones who carefully balanced their anger with love and with insight and with openness. I think that's the best example for the medical community to see in us too, that we are angry but we're driven by our love for our children and for our hope that the world can better manage and potentially one day eliminate this disease.
RC: I could argue that righteous anger in the face of a wrong is not inappropriate.
MN: Righteous anger is a good word for it. One hundred percent. The anger was definitely the thing that made me seek out the reality of CMV and the reality of the silence. I think a righteous anger is different from rage. It was an informed kind of anger and one I wanted to share with people in order that things would change.
RC: "You knew and you didn't tell me."
MN: It feels condescending and that is why the subtitle of my book is A Secret Kept From Pregnant Women. It felt like it was knowledge withheld, that it wasn't total ignorance. People did know. We were uninformed intentionally. Benevolent deception, it's called. Where the knowledge of medical people is not conveyed to people that it affects the most. That's not fair.
RC: Anna is turning 8 this month. How is she doing?
MN: She's great. She's really tiny. Feisty. Spunky, her teacher calls her. She's a really good reader. She loves to go fishing. She can sing on-key which is amazing. She has got a stunning voice. She's a really good big sister and a really good little sister.
Megan Nix, Anna (center, at 2 days old), Zaley
After speaking with Nix, I took my own anecdotal survey. I asked 10 mothers I know if they had ever been counseled about CMV or even heard of it. Not one of them had.
There has been progress. In 2022, Minnesota became the first state to approve automatic testing of every newborn baby. A handful of other states are taking steps in that direction with targeted testing, such as children who fail their hearing test. Baby steps in the right direction.
You can purchase her book at: https://www.penguinrandomhouse.com/books/704982/remedies-for-sorrow-by-megan-nix/
Thank you Ron for this very informative article.
Wow. I’ve never heard of CMV either. Important story.