EBB 406 – Critical Info Every Expecting Family Should Know about Cytomegalovirus (CMV) with Megan Nix, Author of Remedies for Sorrow

Dr. Rebecca Dekker – 00:00:00:
Hi everyone. On today’s podcast, we’re going to talk with author Megan Nix about congenital cytomegalovirus or CMV. Welcome to the Evidence Based Birth® Podcast. My name is Rebecca Dekker, and I’m a nurse with my PhD and the founder of Evidence Based Birth®. Join me each week as we work together to get evidence-based information into the hands of families and professionals around the world. As a reminder, this information is not medical advice. See ebbirth.com/disclaimer for more details.

Hi everyone, on today’s episode of the Evidence Based Birth® Podcast, I’m so excited to welcome Megan Nix. Megan is a nonfiction writer and a mother of five. In 2023, Megan authored Remedies for Sorrow: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother’s Pursuit of the Truth. This is a memoir that focuses on an issue that has been too long ignored. Megan Nix’s writing has also appeared in the New York Times, the Boston Globe, the Washington Post, Brain, Child Magazine, and elsewhere. A graduate of the University of Alaska Anchorage Master of Fine Arts program in nonfiction, Megan currently divides her time between Colorado and Alaska, where her husband is a professional salmon fisherman. And today, Megan’s here on the EBB podcast to educate us about a very important issue that impacts pregnant families around the world, and that is congenital cytomegalovirus, or CMB. Megan, welcome to the Evidence Based Birth® Podcast.

Megan Nix – 00:01:39:
Thanks so much for having me, Rebecca. It’s nice to be here.

Dr. Rebecca Dekker – 00:01:42:
So important that you’re here to educate us on this issue. So I really want to thank you for taking your time as a busy mom of five to be with us today. And I was wondering if you could start off by just telling us a little bit about yourself, you know, your background as a writer and your journey into motherhood.

Megan Nix – 00:02:01:
Sure. So I was a writer before this story landed in my life. Done my master’s work in nonfiction writing and had written some essays. And had my firstborn and wrote about motherhood. I had a fairly typical experience with her and was just kind of blown away, though, by the capacity of the heart after giving birth. Like, it just felt like, my heart was like bursting out of my body and it was a new set of self that I had to deal with. A new set of like… Problems and solutions. So I was writing about that a little bit. And then I got pregnant with my second child. And after giving birth to Anna, everything changed again. And I was a new person again after giving birth to her. And I will get into the trauma of her birth and her diagnosis. But I started to blog about her disease, which is congenital CMV, because at the time she was born in 2015. And I couldn’t really find anything online or in book form that would guide me through the experience of this very complex diagnosis. And that blog became sort of a way of record keeping and remembering the details in the midst of this whirlwind of what one doctor said. Most mothers who get this diagnosis in their child end up going on a downward spiral of depression. Not necessarily because of the diagnosis itself, but because of the vacuum of silence that surrounds the disease, despite the fact that it is the leading cause of birth defects in the United States. And doctors didn’t know about it. People weren’t talking about it. There was no book about it. And I realized I have to write this book. And as a researcher, I knew that that was going to be much different than the writing that I had done, which was more reflective writing. This was going to be layers of history and medicine and memoir. And then the story of our family, which is a little complicated because we live in Alaska for about a third of the year where my husband fishes. So It was a big package to take on, but there was no choice in the matter. I just knew that I needed to combine my experience with what I was learning and give it to other parents.

Dr. Rebecca Dekker – 00:04:36:
I know you’re very introspective. You think a lot about the decisions that you make. I can tell from reading your book and you had a Cesarean with your first, correct? And then worked to have a VBAC with your second.

Megan Nix – 00:04:49:
Right. Yes. And that was sort of like my introduction to something being a little bit off in the maternal care of people who want something one way and have the evidence that it’s fairly low risk. And when we were planning to go to Alaska and I was going to have my second born up there, they said, you’re too high risk. We will not let you have a VBAC here. And I was like, I’m really not any higher risk than anybody giving birth to their first born. And they just said no. So I had to make the choice to stay in Colorado to have a VBAC. And that meant not being with my husband when Anna was born. And In my head, because we’d had a healthy firstborn and I didn’t really have big red flags till the very end of pregnancy, I thought that will be fine. I’ll call him. He’ll come from Alaska. And then she was born and she was very small. She was five pounds and she was completely silent and just staring at me with these black eyes of need. And I knew that. Something was very different, profoundly different about her. And I didn’t have him there. So that was a really difficult start. And I ended up having VBACs with all of my children and just felt like I didn’t have that opportunity to do what would have been best for our family, which was to be together, to have her.

Dr. Rebecca Dekker – 00:06:23:
Yeah, it’s really interesting that like the maternity care system was kind of already failing you in a really visible way and not quote unquote, letting you have a VBAC so you could keep your family together during the birth. But at the same time you encountered like that you had experienced an even bigger, more impactful failure of the system. And that’s kind of what you write about in your book, Remedies for Sorrow. So, you know, you’ve mentioned, we’ve both mentioned cytomegalovirus or CMV, congenital CMV a couple of times. So before we get kind of into the details of your story, for listeners who might be hearing about this for the first time, can you help us understand this condition, this diagnosis?

Megan Nix – 00:07:04:
Sure. So CMV is a ubiquitous virus. Most adults have already had CMV by the time they’re 40. So about 50% to 80%. So that is a majority, but that also means that somewhere around half the population has not had it before they begin to have children. And I don’t know what my status was. I don’t know if I had had CMV. I likely had not when I got pregnant with my second child. And CMV is generally not very harmful in the healthy population, but it is dangerous for pregnant women. And this is what is not disclosed is that CMV is present in the saliva of one out of three toddlers. So most mothers who give birth to a child with congenital, meaning from birth, cytomegalovirus, which is the dangerous kind, have a toddler when they’re pregnant. And we don’t know through hygienic counseling that that toddler’s saliva and urine and snot might contain this disease that in utero can cause deafness, blindness, cerebral palsy, epilepsy, and stillbirth. And all of these can be progressive. So even if you’re not seeing these things early in pregnancy, and we’ll get into this, it gets a little bit granular, there’s just such a lack of dealing with it in newborns that often these children fall through the cracks because they are going deaf, or they are losing their vision, or they are missing milestones without a diagnosis and without treatment. And so the parents don’t know what’s going on. It also causes a lot of behavioral issues, vestibular issues, sleep issues. And one in 200 babies is actually born with congenital CMV, which is a very high number comparative to the diseases that we know about in pregnancy, like toxoplasmosis is present in one out of 10,000 live births. So CMV is under known. I didn’t know about it. And while I was pregnant, I was sharing my toddler snacks. And, you know, I wasn’t like unhygienic, but it’s not common sense during pregnancy to use your own toothbrush or use your own chapstick or not let your toddler drink out of your water bottle and kiss them on the head instead of the mouth. And it’s only during pregnancy that these precautions are necessary. So with my subsequent pregnancies, I enacted those behavioral measures just to see, like, would this be feasible? Because doctors continue to sort of say, women don’t want to worry about this, but we do want to worry because we want to preserve our children’s potential in every way that we can.

Dr. Rebecca Dekker – 00:10:05:
So, I think you mentioned toxoplasmosis, and that’s the one where they’re telling you not to do your cat’s litter box and things like that.

Megan Nix – 00:10:13:
Ccorrect.

Dr. Rebecca Dekker – 00:10:14:
That affects one in 10,000 pregnancies. But you’re saying cytomegalovirus affects one in 200 pregnancies, but it’s still not commonly discussed during pregnancy, the basic precautions.

Megan Nix – 00:10:26:
Yeah. And there’s a long history as to why it isn’t. I write about benevolent deception in my book, which is basically this sort of foundation of medicine that doctors operate with the intention of care for their patient. But when this is taken too far, they benevolently deceive their patients from receiving all the information. And I think as recently as like the 1960s, doctors did not disclose cancer diagnoses to their patients in order to save them from the burden of knowledge. Of course, today, we have a much better understanding that informed consent builds good medicine, that people trust their doctors because their doctors are telling them everything that they need to know. And the American Congress of Obstetricians and Gynecologists, while they’ve come a little bit towards talking about congenital CMV, they still say that telling women during pregnancy and their partners to exercise these behavioral measures that are really not a big deal. And in studies, women have said. 90 to 95% of women surveyed have said, we will totally do these. We are not burdened by these. This does not impact maternal bonding with our other children. ACOG still says these might be impractical or burdensome measures for patients who are pregnant. And that’s just ludicrous. If you ask anybody, do you want to know how to prevent birth defects? Anybody will say, yes, I do. And yes, I will keep my chapstick in my pocket and give my kids an alternative. So that’s just something that is taking a lot of time. There’s also just mountains of paperwork in every practice. OBs are one of the most highly sued groups in medicine. So there’s also some litigiousness there of like, if we say we’re going to disclose this, it’s saying we’re going to catch it. And CMV is tricky. Like it’s evaded a vaccine and it evades the immune system. And it’s complicated because there’s thousands of strains of it. So when you catch CMV for the first time during pregnancy, if you’ve never been exposed to it and you have no antibodies, it crosses the placenta about 30 to 40% of the time. If you’ve already had CMV and you catch a different strain of it, it’s going to only cross the placenta about 1% of the time. But most doctors, and actually I myself, do not recommend that pregnant women are routinely screened for CMV. The tests are not that accurate. We also don’t recommend that toddlers are tested for CMV because they can be positive one day and negative the next. And these are totally healthy toddlers, by the way. They’re often asymptomatic when they have CMV. So really like the blanket advice that should be given to people in their first trimester paperwork is, look, this is a real thing. It’s existed since animals with spines started to evolve. Knowing about it doesn’t increase your risk. It actually reduces it because then you can go home and say, I need to wash my hands really well after I change a diaper. And I’m going to make my own lunch instead of finishing your lunch. Those kinds of very easy, practical things.

Dr. Rebecca Dekker – 00:14:00:
Okay. So it’s not about avoiding the saliva of a toddler who is sick. It’s about just in general, avoiding the saliva of toddlers while you’re pregnant.

Megan Nix – 00:14:12:
Right. Yes.

Dr. Rebecca Dekker – 00:14:13:
Okay. Also, I wanted to bring up, I know you talk out in the book about how it’s a leading cause of stillbirth as well. So we’re not just talking about the prevention of disabilities, but the prevention of losing your child entirely.

Megan Nix – 00:14:24:
Yeah. It’s the leading pathogen linked to stillbirth. And I don’t have statistics on this in my head, but childcare providers anecdotally that I spoke with, they are often like people who have like an in-home daycare center. They are so constantly around the fluids of little ones that they are, re-upping their viral load all the time of CMV. I think in a daycare setting, 80% of children have had CMV by the end of the first two years. And so in these high concentrated CMV pools of children, the caretakers are often ingesting the disease early on in pregnancy. And that’s when the most impact happens during pregnancy. If you catch CMV during third trimester, it doesn’t usually impact the baby. If you catch it during first trimester, those tend to be the babies who do not live past. Delivery and have a host of symptoms at birth and after.

Dr. Rebecca Dekker – 00:15:37:
And what about catching it during this second trimester?

Megan Nix – 00:15:40:
I think that I caught it during the second trimester of my second pregnancy. I did have a mono-like illness. Like I said, sometimes even in the adult population, CMV is asymptomatic. But during my pregnancy around 20 weeks, maybe a little bit before that, I had this cold and so did my toddler that we could not get over. She got over it more quickly than I did. I just thought it was pregnancy, so it was harder to kick. But I did go, I called my OB’s office and I said, I feel like I have mono, I’ve been sick like four or five weeks, and I really need something so that I can get through this. And the nurse said, if you’re that sick, you shouldn’t come in. And at that point with mono-like symptoms, I should have been seen, I should have been tested for CMV. And while there isn’t a great treatment during pregnancy, there is some evidence in other countries that antivirals during pregnancy are helping the outcomes of the baby, and they can also help to prevent the virus from crossing the placenta. That was not made known to me, even in the absence of testing during pregnancy, even in the absence of treatment during pregnancy. The importance was that we would have known. And then we would have said right when Anna was born and she had microcephaly and she was small for gestational age and she was silent. And then she failed her hearing test. That’s like the trifecta. Microcephaly, SGA, small for gestational age, and failed hearing tests. She should have been tested and she wasn’t. Everybody in the hospital looked at her quizzically. We were discharged. It wasn’t until she was 10 days old that our pediatrician, who’s excellent, said. I’m just connecting the dots here. I think we should test her for this little known but common virus. And sure enough, she had it. We did not receive her diagnosis till we were on an island in Alaska together the next week. And at that point, receiving her treatment, which has to be administered during the first month of life for a successful course, was very, very difficult to receive where we live.

Dr. Rebecca Dekker – 00:17:54:
And what is the treatment that babies should receive in the first month of life if they were born with CMV?

Megan Nix – 00:18:00:
So of the one in 200 babies born with CMV, one in five of those will have symptoms, which is significant. That’s 20%. So sometimes that number is used to say like most babies are fine. But it’s sort of complicated because even four out of five who are fine at conferences that I’ve been to, doctors are saying these kids are called asymptomatic, but later they are having some of these issues. They’re having balance issues and they’re having behavioral issues or they have progressive hearing loss. So because Anna did have symptoms at birth, it was recommended, she was the one out of five, it was recommended that we treat her. If a baby is born and tested for CMV and is asymptomatic, right now doctors do not recommend treating those children with the antiviral. It’s called valganciclovir. And that’s because it is a heavy drug. It can stop the bones from producing marrow. So we knew though that Anna had been affected by the virus. She was profoundly deaf. We found out when we had her hearing tested. And so because of that being essentially a form of brain damage, we knew that we wanted that antiviral to stop the progression in her brain, should there still be any. And we consented. And you have to test the baby’s blood on a weekly basis to begin to make sure that they’re tolerating the antiviral. And then after that, you test less and less frequently, but it’s a six-month course. And she tolerated it beautifully. Not all babies do, but in general, I think it’s well tolerated. And it has proven success in stopping the progression of CMV.

Dr. Rebecca Dekker – 00:19:45:
So once a baby is born with CMV congenitally, do they carry that the rest of their life? Or is it like with this treatment, with this antiviral, can the virus itself be eliminated?

Megan Nix – 00:19:59:
No, I mean, CMV congenitally is basically the same as catching it later in life in the way that like we just contain it. It hides in sanctuary cells in the body. And when the body is immunocompromised, then CMV emerges and takes over. And so CMV is very dangerous in the non-congenital population when there’s an instance of immunosuppression. So transplant patients, they’re very careful. And doctors in the transplant community know exactly what CMV is because back before they were testing for it, if a CMV negative person received a CMV positive organ, it could kill them. So if they had CMV and then they became immunosuppressed through the transplant process. That CMV that’s latent in their body can reactivate and they have to take valgancyclovir to suppress CMV’s power in the body. So with congenital kids, I’ve never really known, Anna could have it in her system just like my other four kids might have it in their system. I mean, it stays there. If anybody takes a CMV test, you can see that you have long-term antibodies to it, which are IgG. If you’ve ever had it, you’re going to have evidence in the body that you’ve had it, but she’s not like outputting it. Generally, toddlers will be excreting CMV for up to 40 months. So that’s-

Dr. Rebecca Dekker – 00:21:32:
After they’re infected for 40 months, they’ll have it in their saliva.

Megan Nix – 00:21:36:
From the point of infection up to 40 months, they can be excreting it in their saliva and urine. With a congenital kid, probably similar. I’ve never seen evidence that they’re excreting it for a longer amount of time. And actually, it’s kind of an issue. There is some discriminatory treatment of kids with congenital CMV that like doctors need to wear hazmat suits when that baby’s born and gets a positive, which is ridiculous. Because it’s the toddler who’s sitting on the bench in the delivery room who nobody notices who is shedding CMV. Not the kid who’s swaddled and at the mother’s breast and like completely protected from like any of their fluids going anywhere. And it’s all the kids in the cafeteria of the hospital and at home. And so it’s kind of a nice thing that you shouldn’t be testing toddlers for it because we just have to assume that it’s out there. And once you know about it, you know, and no pregnancy is zero risk. Like I’m not suggesting that because people know about it, we will eliminate the existence of it. But I wouldn’t have been so angry had I known. And I would have, in hindsight, given her the best chance at development had I known that it existed.

Dr. Rebecca Dekker – 00:22:50:
Right. There are a couple of points of failure in your treatment in terms of telling you not to come in when you were sick for a month. Right. Where you could have been tested for CMV, could have been given antivirals, and then just not being told about CMV at all so that you didn’t know to avoid utensil sharing. And you mentioned a couple of preventative measures with being around toddlers. So avoiding sharing utensils, avoiding taking bites of their food that they’ve been eating off of, avoiding sharing chapstick. Kissing on the forehead or the head instead of right on the mouth. And you said washing hands after you change a diaper.

Megan Nix – 00:23:30:
Yeah. And then like mothers whose kids have pacifiers, if you have like a one-year-old and you’re pregnant, don’t pick that pacifier up off the ground and lick it off in your mouth because that’s like a hotbed for CMV. And in studies, these preventive measures have increased your reduction of risk by like 80%. In one study, I believe it was in Italy, when they took a survey of women who had been counseled about CMV versus women at delivery who had never heard of it. Those mothers were seven times more likely to have contracted it who had not been counseled about it.

Dr. Rebecca Dekker – 00:24:12:
So the rationale from ACOG about not counseling women on this in pregnancy is that it’s too burdensome and it’s everywhere. So we just don’t want to worry people.

Megan Nix – 00:24:24:
Right. I think it’s just a giant medical embarrassment that we haven’t dealt with this yet. I also think logistically, it’s just very difficult to make change. The practice that I was seen at for Zaley and Anna. They were very open to talking about it. But then as I continued to go there, and then when I switched practices and friends continued to go there, it just wouldn’t show up on the paperwork where it was like things to be concerned about, or even on postnatal paperwork where it was like conditions your child has, it was nowhere. It was more common than everything on those lists, but it was absent. And those things are just going to take a long time, I think. But the cool thing was I was speaking about my book to a medical book club. And one of the OBs at that book club was retired. And he had worked at the practice where I had been seen for my older two daughters. And I think being a retired OB gave him the leeway. And he had the time to just go right back. And he was like, he went back to that practice. And he was like, we have to include this in the paperwork. We’re getting all new things printed. Like we’re assembling a new approach to this. And he changed it. And so I think sometimes, you know, the plane just doesn’t stop in medicine. And it really needs to stop. And things need to be revised to include this.

Dr. Rebecca Dekker – 00:25:55:
You mentioned in your book that Anna had traditional heel prick where they test your blood for a variety of genetic conditions. Can you explain to our listeners a little bit about that and whether or not it includes testing for CMV?

Megan Nix – 00:26:09:
Yeah. So it’s a little complicated. So the newborn dried blood spot is what the majority of babies in the U.S. get after they’re born and they put the little dots of blood on the paper. Back when they first were checking to see how sensitive the newborn dried blood spot for CMV was, I forget, probably like 30 years ago, it was not very sensitive. So it was sort of ruled out as a possibility for running large scale newborn CMV testing. In place of that, what doctors did to Anna and have done is there’s two other options. You can test the baby’s urine for CMV, which is the most sensitive. So they caught Anna’s urine after my pediatrician suggested in a little potty purse, the nurse called it. They just strap a little. Plastic triangle on their hips. It’s not invasive. It’s not painful.

Dr. Rebecca Dekker – 00:27:06:
And into a baggie.

Megan Nix – 00:27:08:
And they send it to a lab and it was positive. They can also use a saliva swab inside the baby’s mouth, but that’s a little less reliable because if the baby has breastfed within the last two hours, CMV can appear in the breast milk if the mother has CMV in her system, but the baby doesn’t. So the breast milk one, you can use it fairly accurately if the mother is withheld from nursing the baby for a few hours, and then you can do the saliva swab. Either way, the urine is more sensitive. So it’s used to confirm. A doctor in Minnesota, Dr. Mark Schleiss, who had worked in the CMV field for years and years, he said, I wanna recheck the newborn dried blood spot CMV assay and see if that test to pull CMV out of the blood spot is now more sensitive than it was using that old technology that said it wasn’t sensitive enough. So with a woman named Sheila Dollard at the CDC, they ran a big study to see, can we use this newborn dried blood spot? Because the dried blood spot is already done on the vast majority of American babies. So that means you don’t have to have the education level or the assertiveness or the knowledge of CMV to be like, hey, can we please get this in a bag? Can we swab the inside of the mouth? It’s just in the blood. And so it’s not socioeconomically or just an equitable already there test that’s cheaper too. And so they figured out that it is in fact way more sensitive than it had been previously believed to be. And it’s about 60 to 80% sensitive for picking up CMV in the newborn dried blood spot. So it’s not perfect. But as they were cross-checking with urine confirmation, they were seeing that it was catching a lot more babies in Minnesota to use the newborn dried blood spot and then confirm with urine. And so in Minnesota, they are universally testing all babies using the newborn dried blood spot. Every baby that is born there is now checked for CMV. And Connecticut also has universal testing. And then New York had a pilot program for a year. They tested all babies to see about the viability of the newborn dried blood spot. And it proved viable. So they are in the process of a universal testing bill right now with the New York government. So most states have what’s called targeted testing. Not most, but most states with CMV legislation, including Colorado, have a targeted testing mandate, which means if a baby is born with. A small head size, a small weight, or they do not pass their hearing tests, they are then tested for CMV. And depending on the state, some are using the newborn dried blood spot, some are using urine. If you give birth to a baby and they have any of those symptoms or in utero, they had high drops, which is like fluid around the fetus, intracranial calcifications. If they’re born with jaundice, if they have an enlarged liver or spleen, those babies should be tested for CMV. There’s a whole list of red flags during pregnancy and at birth on the National CMV Foundation’s website. If you go to resources and then educational downloads, they have printable free printouts. Listing what to be looking for in order to request a test. And you can request one no matter what. With my next kids, I wanted to see how it moved through the system. So each baby I had, I said, I want to test them for CMV just to see how much pushback there was, how expensive it was. It is not expensive. And actually, after you have a kid with congenital CMV, it’s like a 0.01 chance of having another child with CMV because you have such strong immunity to it, having had a strong case of the virus. But yeah, each one was different. None of them were tested especially smoothly for it. And that’s just the infrastructure isn’t there yet in the back end of hospital systems to run these tests in most places. But it’s moving. It’s moving forward. There’s a lot of good progress happening. And I think part of the CMV story is just being willing. Unfortunately, as babies are born with this and missed and their treatment is missed, is that this change, if it’s going to be done right, does have to be done slowly.

Dr. Rebecca Dekker – 00:32:01:
It’s like the change has to happen slowly, but these babies need prompt treatment if they’re going to have minimal effects from it, or at least the progress stopped of the disease process.

Megan Nix – 00:32:15:
Yeah. Yeah.

Dr. Rebecca Dekker – 00:32:16:
Can you talk a little bit about the importance of hearing screens? I know most people have the universal hearing screen test, but you mentioned sometimes the hearing loss is progressive. So can their hearing change as they get older through infancy?

Megan Nix – 00:32:32:
Yeah, that’s really the main concern of babies who are born fairly healthy with CMV is that a loss of hearing, especially a progressive loss of hearing, can change everything for that child. If the parent doesn’t know that that child has CMV because they were born asymptomatic, you know, just good size, passed their APGAR test, all those kinds of things, but they silently have a CMV infection, they might be losing their hearing very, very quietly and unnoticeably till they are deaf by the age of three or four. And that then causes speech delay. It causes them to feel isolated from people. Their behaviors change. They aren’t as social. And so with that early diagnosis of CMV, even in the babies who are totally asymptomatic, those kids need regular audiology checkups to make sure that their hearing is not slipping. And we were outside of that because Anna had no hearing, but some families that I know, their kids have started out with a mild hearing loss, and then they go on to have profound hearing loss within a few years and need cochlear implants. And in the absence of that CMV test, those kids would not be identified until that zero to three window had passed where all of that explosive brain development and language development happens.

Dr. Rebecca Dekker – 00:34:05:
I’m thinking about, you know, as you wrote the book, you gradually, you know, as the story goes on, you’re reflecting on your journey of parenting a child with a disability. How is your understanding of disabilities and children evolved through your own journey?

Megan Nix – 00:34:21:
I think they’re the most incredible kids ever. It’s a weird thing to be advocating for the prevention of the things that make our daughter who she is. And yet they cause issues realistically, like nobody wants their kid to have epilepsy. Nobody wants their kid hospitalized for hip surgery. Deafness is a little bit different because it is so culturally proud and strong. And we love the deaf community. We took sign language for six years. We did get cochlear implants for Anna because we didn’t know with her development as delayed as it was if she would be able to sign because CMV can affect gross and fine motor skills. So we wanted to give her all the tools that we could for her to navigate the world and hear the world. But some families don’t. And that’s sort of outside of what I’m talking about when I’m talking about prevention. Other things that CMV causes are medically burdensome. Disabilities as a category, I think you can ask any parent of a disabled child and they delight just as much in that child. And maybe even their endearment and their protection and their ferocity for that child’s well-being is above what they had known before. I know that I took for granted Zaley’s early development because I just knew she was going to make sounds and stuff. And with Anna, it was like when she made her first B sound, it was like a huge celebration that she could bring her lips together. And I do think that is a misconception that if you have a disabled child, your life will also be in a state of deficit. And it totally isn’t. I mean, yes, there’s more appointments, but we fell in love with so many of her providers and her team grew our hearts and our minds and our knowledge of what it’s like to live differently. And Anna continues to do that. She’s 10 now. She’ll be 11 actually next week. And she’s very articulate about the way that she is. She’ll say to me, like, well, she kind of made the choice to speak rather than sign. We had given her both. And she was just like, I’m going to talk to you even if my ears are off. Like you can sign to me, but I’m going to talk back to you. And she’s just remarkable. And I think that conditioning for astonishment. Was different with her and continues to be just a marvel in our lives.

Dr. Rebecca Dekker – 00:37:01:
What are some of the stories or themes you’ve heard from other parents of children with CMV that have stayed with you?

Megan Nix – 00:37:10:
The first family that we met whose child had CMV, he was actually deceased. And that was a very difficult part of our journey with the disease and with Anna was that no doctor put us directly in touch with a family who had gone through it. And she found me through a registry through Baylor College in Texas and reached out to me. And I couldn’t believe it. I was like, I can’t believe she wants to have me over. Her son, Jaden, had died years prior. And here I am with my child who is thriving and two. She said, come over and have coffee. And I was just so blown away by her love for Jaden. Like she showed me all these photo albums and he had never spoken a word. He had never sat up. He was wracked by seizures and she had three girls and they were obsessed with him. And I just found their devotion. Absolutely beautiful. And another family in Arizona that I’m close with, her name is Kathleen Muldoon, the mom, and their child Gideon basically has everything that CMV can cause in a child. I think he has like 37 diagnoses within the CMV diagnosis. And he is amazing. They are, he communicates through an eye gaze device. They are putting him into mainstream classes because they know that even though he can’t speak with his mouth, his brain is on in there and they want him reading the same books that the kids in his age group are reading. And they have just made incredible change in the state of Arizona through Gideon and their love for him. So I’ve just seen just so many families who are initially just totally beset by grief and fear and isolation, rise to this place of just heroism, really, in many, many different states. And I do think that is like, we know as humans that suffering brings about meaning and brings about change that needs to happen in the world. And none of us want that suffering, but you can really see that in the CMV world, that this population of people who has been held in a silence with our silent children have this voice that is undying. And even though the progress is very slow, I just see people just persisting. On behalf of their children in a way that I had never known existed personally before.

Dr. Rebecca Dekker – 00:40:11:
Yeah, you mentioned a culture of silence. And I think that kind of brings us back to the beginning when we were talking about how people weren’t talking about this and OBs aren’t talking about this. And you also said something in your book that stuck with me about how your default reaction in medical settings when you were a younger mother was silence. Can you talk a little bit about why you didn’t always speak up and, how you use your voice now, kind of like the difference between then and now.

Megan Nix – 00:40:39:
Yeah. Well, we know there’s that trope of the hysteric woman. And I really felt that during pregnancy, I needed to behave or I would be construed as overly emotional and that that would somehow reduce my impression of intelligence that I was making upon the doctor. And that’s really not fair. Women are emotive beings and I cry all the time. And that’s actually a part of the book. The Remedies for Sorrow are these suggestions that St. Thomas Aquinas had for not eliminating sorrow, but remedying it in the short term. And one of them is weeping. And I think culturally, we are just told not to weep. And that’s sort of like come a long way from the way things used to be there. I think there is more support of like men crying and children knowing that emotions are not bad and you can name them and, you know, express them. But I still feel that I need to apologize if I’m crying. And that was definitely the case in the medical setting during pregnancy. Some of us, I didn’t want to be the squeaky wheel. I wanted to be like, I got this, like I already had a baby. I’m good. I just need some medicine because I’m really sick. But after that, assertiveness felt a little pushy and it didn’t feel like. I knew the answers either. So I didn’t know what I was aiming for. Like, I didn’t know what questions to ask. Can I get a CMV test was not apparent in my head. I had never heard of CMV. 90% of pregnant women have never heard of CMV, so they don’t know what to ask for. And- So I think you have so many appointments that you could either be kind of worried about a lot of things and many women are, and that’s fine. Or for me personally, I just wanted to kind of downplay my worry. And when I was told if you’re that sick, you shouldn’t come in. I thought, oh, yeah, maybe I’m just like overly worried.

Dr. Rebecca Dekker – 00:42:44:
And I don’t want to expose the other women in the office.

Megan Nix – 00:42:47:
Yeah.

Dr. Rebecca Dekker – 00:42:48:
Yeah.

Megan Nix – 00:42:48:
You’re like, yeah, maybe I shouldn’t come in. And my husband, Luke, he’s awesome. He’s very stable. Which can be really annoying. It can be like, well, I’m worried about this. He was so such a rock for me in the beginning days of Anna’s diagnosis. He said to me, because I was really worried about what the rest of her life would look like, not having ever been around somebody who might have had all the things that were placed in front of us as possibilities. And he said, no matter what, Megan, we will love her just the same. And that was very true and very good for me to hear. But at my doctor’s appointments, you know, I did feel that like, it’s going to be okay. Like everything’s fine. Kind of the Luke voice, like everything will be fine. So I’m not saying that like everybody thinks you’re hysterical. But it is, I think, part of our burden as the more expressive and emotional person, whoever that might be, to feel like you should be quieter.

Dr. Rebecca Dekker – 00:43:52:
And now at your kids appointments.

Megan Nix – 00:43:55:
Now my doctors usually ask me to give talks on congenital CMV. They’ve been very open to it. And that’s been very rewarding to call out where things were missed and to also call out where they did a great job and to show pictures of the providers. One thing I realized while researching my book. Was that the other end of the spectrum from benevolent deception is this thing called narrative medicine, which is basically a doctor taking time to learn the family or the patient’s whole story. And that this kind of narrative approach to CMV was missing. Systemically, doctors didn’t know the full story of CMV, but also on a personal level, nobody was saying to me during pregnancy or afterwards, like tell me your whole story. And I’m always suggesting that to doctors, however they can, I know doctors are busy and they have big practices, but studies have shown that when that type of narrative approach is used. The patient trusts the doctor more. They’re more willing to follow through with treatment. They’re more willing to return to that practice rather than just feeling like, you know, you’re a cog in the machine and here’s your script and head out.

Dr. Rebecca Dekker – 00:45:12:
It actually makes the doctor’s job easier in the long run.

Megan Nix – 00:45:15:
Totally. And enjoyable.

Dr. Rebecca Dekker – 00:45:17:
We have a podcast episode on narrative medicine. I’ll make sure we link to it in the show notes.

Megan Nix – 00:45:21:
Oh, great. I love it.

Dr. Rebecca Dekker – 00:45:23:
Yeah, you brought that up.

Megan Nix – 00:45:24:
I just think it’s so beautiful. I think that- We learn through stories and we know each other through stories and it has the potential to heal the brokenness of the medical system. And so I usually talk about that. You know, I talk a lot about CMV, but when I’m at practices, well, we don’t go to any providers who don’t seem to practice narrative medicine. I learned very early on to identify that quickly in physical therapists and occupational therapists and speech therapists. And our pediatricians were practicing that already. So we have the same pediatrician. I switched my care to a totally different practice. And I have had to be more assertive than I might be naturally. But I think it’s there is a way to do that without the negative connotation of assertiveness being part of the doctor patient relationship. You know, I think it’s it’s just asking more questions. Spending more time and insisting on more exploration when you’re concerned about something. And so. That has changed me for the better, for sure, with Anna’s diagnosis.

Dr. Rebecca Dekker – 00:46:41:
Yeah, you found your voice and I really appreciate that you have spent so much time educating so many people about this condition. I hope in another 10 years we’ve come even farther with this topic. If you could leave our listeners with one piece of information about CMV or about trusting yourself, what would you leave them with today?

Megan Nix – 00:47:06:
I would say to trust your intuition. And to also be aware of CMV if you’re pregnant or hoping to conceive. I’ve seen a meme that says like, congratulations on the baby. Congratulations on the baby. Have you heard of CMV? Congratulations on the baby. So like celebrate the life that you are giving to a child, but know that this is something that is preventable and is important and prevalent. And there are many, many good doctors who also know what it is and find them if you end up having this kind of diagnosis in your family.

Dr. Rebecca Dekker – 00:47:46:
What’s the website again that you mentioned of the foundation?

Megan Nix – 00:47:50:
And the website is nationalcmv.org. And my book is Remedies for Sorrow. It was published by Doubleday in 2023. And I hope everybody reads it.

Dr. Rebecca Dekker – 00:48:03:
Thank you so much, Megan. It was wonderful talking with you.

Megan Nix – 00:48:06:
Thank you so much for having me, Rebecca.

Dr. Rebecca Dekker – 00:48:10:
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