Emily Oster:
So, welcome to ParentData. I am absolutely thrilled to invite Megan Nix to join me today. Megan is an author, her book, Remedies for Sorrow is out I believe tomorrow based on when you’re hearing this podcast. And I am just really thrilled to get a chance to talk to her about it. So, Megan, welcome. Thank you for joining me.
Megan Nix:
Thank you. Thanks for having me, Emily.
Emily Oster:
I would love to start by just asking you to introduce yourself and introduce the book in whatever way feels right to you.
Megan Nix:
Great. So, I’m a mother. I’m actually a mother of five, just recently had my fifth. And when I was pregnant with my second, I had a feeling something was different about that pregnancy. I had a toddler at home. And unbeknownst to me, I had contracted a virus from my toddler called Cytomegalovirus or CMV. But it wasn’t until my second daughter, Anna was born that we realized what CMV even is. And she was born profoundly deaf and moderately delayed from CMV. And that began my journey investigating the disease, writing a book about it, and just paying extra close attention to the way parenthood had been presented to me and was being presented to me through social media, through my relationships, through the health system.
And just coming to terms with a truth that didn’t seem to be aired to me as a mother until I became one, and continues to be that way. Every time I have a child it’s like, oh, this is a new thing that I never knew existed and that was never spoken about. But CMV seems particularly silenced in history, in medicine and socially. So, that’s the basis of my book was exposing that truth.
Emily Oster:
It is a very profound book and both very readable. I mean you’re an excellent writer, but also I think the feeling, particularly at the start of the book when you talk about the journey of trying to figure out what was wrong and the feeling of knowing that something’s wrong, but also just the search for that. For me, it felt very resonant with a lot of the way early parenting can feel and the way that our instincts can feel. Like we are explaining, no, you don’t understand, there’s something going on here and I need to understand it better and we need to get to the bottom of it. And being confronted with sometimes a system that is not really helping us get to the bottom of those things.
Megan Nix:
And I think pregnancy in general is medicalized and something to be fixed. And you feel like you just move through these appointments without being really spoken to or understood. Especially with my first and then with my second, because of CMV, I kept thinking something is going on. I just intuitively knew that something was different, that she was too small. I could tell when I looked in the mirror I was too small. And then when she was born, she was five pounds, went home with a four pound baby and nothing. Nobody said anything to me. And I was like, am I going crazy? I just feel like there’s this giant elephant in the room. And it turns out the elephant is in the room of every pregnancy with CMV, because it’s not disclosed to pregnant women.
But in general, I feel like right now, so Anna, my child with CMV, she’s almost eight. I think now thanks in large part to your books, but many others, pregnancy is being portrayed more realistically. The needle is moving slowly, but I see it moving in literature for sure. But I did have that experience of not feeling seen or heard. And then it turned out almost validating to see that, oh, this entire disease hasn’t been seen or heard either. It’s not just me feeling like a crazy person.
Emily Oster:
Yeah. So, I want to dive into this, because you actually mentioned expecting better in your book, which thank you for reading it. But you note that I do not talk about CMV in the book, which is something we are also going to remedy. But it is in a sense I think of myself as trying to write books that surface a lot of information that people otherwise might not get and keep them as informed as possible. And this is something I did not know about. So, you are the expert on this here, certainly on this call, and I think in some very broad senses as well. Give us the overview of CMV. Yes, it’s a virus. What is the implication for pregnancy? How do we think about it in this space?
Megan Nix:
Sure. So, CMV is a ubiquitous virus that is generally harmless to the healthy population. Toddlers can have CMV and you’d never know it. Adults can have it. It’s dangerous if you’re immunosuppressed, but it’s very dangerous if you are pregnant. And CMV transmits through the saliva and urine of toddlers. And generally, it is present and contagious in the saliva of one out of three toddlers. When you contract it when pregnant, if it’s the first time that you’ve contracted it, you have about a 33% chance of it crossing the placenta and reaching the fetus. And if that happens, it can cause a huge range of symptoms in the baby, blindness, deafness, cerebral palsy, epilepsy, autism, early infant death, stillbirth, are some of them.
It’s the leading cause of birth defects in the United States and likely the world, though we don’t have great data on the global population. If it’s not your first time contracting it, which is called a reinfection, it’s a lot less likely to cross the placenta, but can still result in disability. And worldwide reinfections are causing just as many symptomatic babies with congenital CMV, as like primary cases are in the US I believe, if I’m stating that right.
Emily Oster:
Yeah, I think that’s right. Just to flesh that piece out for people, just so we think about the numerator denominator piece, most people coming into pregnancy have had CMV at some point before. So, if they are affected again, it will be a reinfection and then that can have some consequences less severe. But because that’s a much larger number of people, actually most of the birth defects associated with CMV are a result of reinfections, just because the denominator of susceptible people there is bigger.
Megan Nix:
Exactly, yes, what you said. So, in a reinfection, it’ll cross the placenta about 1% of the time. And so, a big problem with CMV is that it does tend to be invisible at birth. In the symptomatic babies you might have… My daughter was symptomatic at birth. She was small for gestational age, she was 40 weeks, but five pounds. And she failed her hearing tests. So, those are visible “symptoms.” I mean the deafness is not visible, but because we have this great system today for testing newborns’ hearing to flag them for hearing loss or other diseases, that is really the big signifier that CMV might be present. However, most hospitals are not testing babies for CMV even if they do fail their hearing tests and even though CMV is the leading cause of non-genetic deafness in the world.
So, a lot of the advocacy work around CMV is using this red flag of the failed hearing loss tests to say this baby might have other things going on besides the hearing test. So, basically, the virus, you want to try to avoid it when pregnant because of the damage that it can cause. One out of five babies will have CMV, will have symptomatic CMV who are born with it. Four out of five will likely not have lifelong impairments from CMV. But again, the data is pretty shaky on that. And I was at a conference in Alabama where there’s a lot of research coming out about CMV. And one of the doctors said, “We’ve never really seen a true lifelong asymptomatic case.”
Even the kids who are deemed asymptomatic are having behavioral issues, sleep issues, eating issues. And so, in my head, we really don’t have enough cumulative data to say that in four out of five cases CMV leaves a child unharmed. So, sometimes doctors will say, “Yeah, but the vast majority of kids with CMV are okay.” 20% is a large number of kids to still have basically disabilities from CMV and 80% to have other things going on that we haven’t even connected back to the disease.
Emily Oster:
Yeah. I mean I think it’s really worth underscoring that we are talking about something that is the leading cause of birth defects in the US. And yet it is a topic that I think many women and even to some extent their doctors are not talking about or thinking about during pregnancy. So, we have pregnant women who are often encountering toddlers and toddlers often have this virus. And that is a risk, but yet again, it’s something we’re not talking about. And so, I know a lot of your work after Anna was born has been in this space of trying to think about advocacy, thinking about informing people about this. I, after having read your book, talked to a bunch of doctors about this question of CMV and why are we not talking about this.
And the thing that they say back is, “There’s really nothing to do. We don’t have a vaccine. Because this is often in adults would be just asymptomatic, would just feel like a cold typically. And because it’s everywhere, if I test people for this, it’s just going to scare them. It’s just going to make them anxious and there’s really nothing that we can do. We can’t offer people anything.” And so, I’m curious from the other side of this, what you think about that claim, that argument?
Megan Nix:
Well, I think it is fairly paternalistic to say that women don’t deserve an education in something that could be prevented just because doctors don’t have the power to fix it. That’s not how we raise humans, grow humans, are humans. We want to know. And studies have shown that 90 plus percent of women want to know about CMV, want to know what they can do to reduce their risk. So, to me, it just falls into that truth that we all are coming to know about the medical field, which is that it is often governed by money. And doctors don’t make money on conversations as much as the medical system does on interventions, and vaccines, and being able to do something that will in a more quantifiable way heal people.
So, really, the knowledge of CMV prevention is what we need right now, which is that if we can do better to avoid our children’s saliva by not kissing them on the mouth, keeping toothbrushes to ourselves, not finishing their snacks, these are very doable things. And in the studies women have said they have no problem doing these things. They are happy. If it’s happy to do this, if it’s going to prevent stillbirth, that is not something that doctors should be saying, there’s nothing to do about this. There is something to do about it. And the conversation is really just the first step, because once the conversation builds, then the National Institutes of Health might fund bigger studies so that we can say there is a treatment during pregnancy.
Which that’s a little bit complicated right now, but there’s evidence coming out of Israel that there is an antiviral to take during pregnancy that can greatly reduce the risk of it reaching the fetus. So, until we have the education in place and that conversation between pregnant women and their doctors, we’re not moving forward to fix CMV. We’re just saying what doctors have said for the last 70 years, which is we’re washing our hands of this and let’s continue to keep it quiet because it’s going to scare women. Well, keeping it quiet is not just scaring women, it’s disabling children. And that’s not fair.
And I think it’s important not to fearmonger, but to put it in the place of all the other things that we do during pregnancy that are preventive, like preventing spina bifida with prenatals. That’s more proactive than education, but toxoplasmosis, avoiding kitty litter, which affects one in 10,000 babies versus CMV infecting one in 200 babies. If we can do that about toxoplasmosis, we can do that about CMV. Toddlers are in our faces, but we can do better at knowing that they pose a risk.
Emily Oster:
And I think part of what I hear in some of this pushback is we don’t like to tell people here is something to be afraid of, for which we have only a partial and somewhat under research solution. So, it’s fine to say, here’s something to be afraid of and here’s what you do about it. We’re very comfortable with that. I think there’s too many things in some sense that we tell people to be afraid of. But this space of saying this is actually something that is a concern. You shouldn’t lie awake at night thinking about it all the time, but it is a concern and we have a partial solution. We don’t like that, because it feels unproductive, I guess, or like it’ll sponsor more questions or that there will be some blow-back there. And I think that’s not what patients like to hear. And as a result, it is not often the message that we like to deliver.
Megan Nix:
Yeah. And I do think it’s complicated. I mean, I think there are very good doctors who don’t want to worry their patients, who don’t want to send them home with a disease that will require further research. I mean CMV is not simple. Its treatments aren’t simple, its presentation isn’t simple, its history isn’t. And yet women, and this is a big part of my book, is that our capacity is beyond what doctors are allowing us to have. And we are literally more capable of containing during pregnancy than any time in our lives. And women are, for the most part, very willing to take on the task of a partial solution as opposed to no conversation. The majority of doctors who actually talk deeply about CMV and understand it do want women to know. And so, another part of this is just a miseducation. And a lot of physicians have not learned the ins and outs of CMV from medical school forward.
So, they truly don’t believe that it is something that is prevalent and that it could be prevented through these simple hygienic measures. They just think because in the ’50s it was deemed something that we could never eliminate, we might as well not worry women about it. And so, that has just been handed down. And almost every doctor I know when given the chance to look more closely at it, is open-minded and says, “I can’t believe this.” Dr. Suzanne Koven who wrote Letter to a Young Female Physician and who I quote in the book, she called the CMV data gobsmacking. She just couldn’t believe that her whole life as a doctor, she did not know this hidden history.
Emily Oster:
So, I’d love to talk a little bit more about your path after Anna’s birth. So, you spent a bunch of time getting to a diagnosis. And I guess I just wonder if you talk a little bit about that process for you.
Megan Nix:
Well, a large part of the book takes place on a remote island in Sitka, Alaska. Our lives are just so ridiculous. So, we leave Colorado for four months of the year to live on this small foggy island in Alaska. The town is called Sitka. And there is one hospital there, and luckily it’s a good hospital. But we did not test Anna until the day before I was flying to Alaska with my girls and my mom. And so, we didn’t receive her diagnosis til we were totally apart from the medical mainstream. I got a phone call that she had CMV. And I had researched it in the interim, and I mean, it was like the floor had been ripped out from under me to know that she had this disease that came with so many unknowns. She could be fine at birth, and lose all of her hearing and become blind and have cerebral palsy.
She might not live past the age of two or three. And some of these babies who are severely disabled do look fine at birth. And with Anna being symptomatic, it was just this immense worry that followed me throughout the rest of her early childhood. And so, we went to the hospital in Sitka after we got the phone call. And we have a great pediatrician there who said, “To be honest, this is a very serious disease. I’m going to have to do some research at home.” And I was actually very moved by his willingness to say that he didn’t know enough and his willingness to go do more. And so, about a month later, I flew down to Seattle with Anna, because the hearing test equipment in Sitka was not adequate enough to see if she could hear.
Her brain wasn’t making any instinctual responses to sound, but I just had this weird hope that she was hearing because she would turn towards sounds and probably just coincidentally was moving towards motion. Because when I got to Seattle and we had what’s called an ABR test, it’s a two-hour auditory brainstem response test, she had no response at all. And so, then knowing that she was profoundly deaf broke open this question of what else was CMV doing without our being able to know. And really, that’s just a question that CMV mothers live with and that all mothers live with. What is happening in our child’s brain? And what has our birth experience given to them? And what has our parenting practices enabled in their bodies?
We never know. And she will always be a great mystery to me. But she met all of her milestones late. She did not crawl till she was 13 months old, I think. She did not ever have any sign of chorioretinitis, which is the manifestation of the virus in the eye that can make a child go blind. And she ended up walking around the age of two. We did this therapy called the Anat Baniel Method, which is an Israeli movement therapy. And I read her book, it’s called Kids Beyond Limits. It’s excellent and it’s great for any parenting. It basically says milestones are an ableist approach to parenting and kids will really do things on their own time. And to hold them to this standard timeline is to expect of them things that might not be innately part of their system.
It’s like handing a kid a guitar and saying, play it faster, when they’re starting to learn guitar. You have to allow it. You have to engender it with patience, and hope and learning. So, I really loved that book. And it’s actually helped me parent all of my children, to remember that emotional maturity is not something that can be rushed, neither is physical maturity. And benchmarks in medicine are good. We want to make sure kids are not falling behind on stuff. But as a parent, I really appreciated that empathetic slow method of watching Anna grow. And so, we ended up learning sign language. There’s a free program in the State of Colorado where a deaf adult comes to your family and once a week teaches you sign language.
And we really loved the teachers. They became like family members. And we learned over the course of six years, a pretty good basis of sign language. We are nowhere near fluent. But we also decided to get Anna cochlear implants. There’s no deaf people on our island in Sitka. One child actually moved there who’s in the book who is deaf. And he was a real gift to our family. But we just wanted to give her everything we could, knowing that CMV might also impact her fine motor skills to do sign language, ASL. And we just thought give her everything, make use of every resource there is. And actually, in the deaf world, we never experienced any kind of backlash from any deaf person that we had made the wrong choice. That’s something we prepared ourselves for, but we were always met with love.
So, she ended up being able to speak. And she is thriving and she’s just remarkable to us. And throughout the process of watching her grow, I also sought out families whose children had died from congenital CMV and whose children were severely disabled. And just loved their children, and loved them, and really learned from them the impact of the silence of CMV and what life looks like all along the spectrum. And it’s a beautiful spectrum, but it’s also painful. And so, that ended up being a large chunk of the book too, was a biography of these other families.
Emily Oster:
Yeah, it’s extremely powerful. So, I want to end by asking about advocacy. So, you talked some in the book about what you are advocating for here. So, we talked about the idea of education and of doctors educating women who are pregnant about the ways that they can prevent this. What else do you see? I mean, do you see a role for broader policy here and what is the policy that you want?
Megan Nix:
Right now, in a lot of states, there’s a push for policy change to educate pregnant women, to educate healthcare providers, and to educate hospitals on how to implement just the conversation about CMV, whether women are pregnant or whether they have a child who’s facing a diagnosis with CMV. The other big policy push is to test all newborns for CMV. So, this is the other reason that the conversation is important during pregnancy. We might not have a perfect thing to tell women during pregnancy, but we do have a powerful thing to treat children who are born with CMV. And if their parents and doctor haven’t heard of CMV, we are not treating the newborns who have it. And in fact, we are treating between zero and 10% of kids born with CMV with a drug that is effective.
So, Anna did take this antiviral because she received her diagnosis in time. But the policy push is in some states to test children who have failed their hearing test or who have a sign of CMV of birth, which is called targeted testing. So, we would be testing the ones who have a sign of it through targeted testing. If we test all newborns, then we have better data and we’re way more likely to catch more babies who have CMV and qualify for the medication, for the antiviral. Because with the vast majority being asymptomatic at birth, we’re going to miss tons of kids if we’re only targeted testing when they have a sign of CMV.
So, the antiviral, it’s called valganciclovir, and it’s effective at stopping the progression of CMV in the brain, and in some cases, stopping the progression and even reversing the progression of hearing loss in babies. So, the automatic or universal testing of all newborns is something that is in motion now, because a doctor in Minnesota, Dr. Mark Schlise, he passed legislation to test all newborns in Minnesota for CMV through the newborn dried blood spot, which is the heel prick that we already have in place in all hospitals. And it’s not perfect, and he admits that. It’s about 85%, what’s the other word in testing specific, you know better.
So, we have a margin of error there, but he says, let’s do it and in 10 years we’ll have something better. And you can’t let the perfect be the enemy of the good. Let’s test all the babies and see how many more we capture with the newborn dried blood spot, because it requires no extra infrastructure like testing. You can test very effectively for CMV using saliva or urine, but those are expensive because you have to train the whole hospital system how to gather the specimen. So, a lot of states have these policies in motion. And the goal is to eventually add it to the RUSP, the RUSP, which is the Recommended Uniform Screening Panel, which would allow it to be tested for in all states, on all newborns. And the National CMV Foundation has applied to add CMV to the RUSP, but that can be another three to five years before it’s on there and available to all states.
Emily Oster:
Well, I very much hope that you make progress here. I think my guess is that you will make some progress and the book is at least the first awesome step.
Megan Nix:
Thank you.
Emily Oster:
So, the book is called Remedies for Sorrow. It is absolutely fantastic. And thank you again for joining me.
Megan Nix:
Thanks so much, Emily. Thanks for having me here.
Emily Oster:
Thanks for listening. If you like what you heard, subscribe to ParentData in your favorite podcast app. And rate and review the show in Apple Podcasts. You can subscribe to the whole newsletter for free at www.parentdata.org. Talk to you soon.
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