Megan Nix, REMEDIES FOR SORROW: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother's Pursuit of the Truth

Writer Megan Nix joins Zibby to discuss REMEDIES FOR SORROW, a compulsively readable memoir and urgent call to action about a hidden risk to pregnant women: the congenital cytomegalovirus. Megan shares the story of discovering her daughter’s microcephaly at thirty-six weeks pregnant, and the subsequent challenges of raising a baby with CMV (against the dramatic landscape of Sitka, Alaska, where her husband is a salmon fisherman). The conversation delves into her advocacy work, the lack of awareness about CMV, and the importance of universal screening for newborns and support for affected families. She also discusses the writing process and the challenge of finding a publisher.

Transcript:

Zibby Owens: Welcome, Megan. Thank you so much for coming on "Moms Don't Have Time to Read Books" to discuss your memoir, Remedies for Sorrow: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother's Pursuit of the Truth. Welcome.

Megan Nix: Thank you so much for having me, Zibby.

Zibby: Tell listeners about your story, about your daughter, about what happened, your advocacy, all of it. Just start from the beginning. Just the fact that you live in Alaska and Colorado, this is amazing. The backdrop of the story is just sensational. Go for it.

Megan: I'm in Colorado now. Yes, we live in Alaska for about four months of the year during salmon fishing season where my husband's a professional fisherman in Sitka, Alaska. In 2015, I was pregnant with our second child. I had a pretty typical pregnancy until thirty-six weeks. I say typical, but intuitively, I knew something was different. I would turn sideways in the mirror, and I just looked small to myself. My OB and the midwives at the practice that I go to where you kind of cycle between them, they just said, "There's a large margin of error when we do the fundal measurement. You look great." Then at thirty-six weeks, it turned out the baby had microcephaly, so her head was disproportionately small to her body. From that point forward, everything changed. When I gave birth to her at forty weeks, she came out, and she was completely silent. She had these deep black eyes that just bored into me. I knew she was alive, but she just totally rocked me with both awe and this drawing back knowing that there was something that was not voiced about her. This continued to be the case. I could also see that she was remarkably small. It turned out she was five pounds at forty weeks. She went on to fail all of her in-hospital hearing tests. The rotating pediatricians would do their assessments of her, but they were also very silent. I would say, "Is everything okay? Is everything okay?" They just seemed sort of perplexed but not forward with any kind of testing or questioning.

We were discharged from the hospital. At ten days, I went to her first pediatric appointment at the pediatrician's office. We had actually moved it earlier than the typical two weeks because I was leaving for Alaska the next day with my mom and my daughters. My husband had missed her birth and was already up fishing. He's a very involved dad, but we had decided that I would have her in Colorado because I didn't want to have a second c-section and recover from surgery during his seven-days-a-week working schedule in Alaska. The pediatrician looked at her failed hearing test and her size. He said, "I want to test her for this common but little-known virus called CMV." I thought CMV was just the flu or something that was going to be quickly passing. I said, "What do you do if she has it?" He said, "If she has it, then there's an aggressive medication that she needs to take." He didn't reveal the spectrum at that time. I said, "I need to be with my husband. I'd like to leave for Alaska tomorrow." He said, "I think you should still go. You'll get the results when you're up there. A pediatrician there can direct your care." He tests her. It's a noninvasive test. He might not have done it. It's just a urine catch. They tape what the nurse called a potty purse onto the baby's hips. She peed, and it went to the lab.

We got to Alaska. Prior to leaving for Alaska, of course, I googled CMV. It opened this deep, dark hole of terror. It was basically this congenital condition that I could have passed onto the baby in utero that can cause deafness, blindness, cerebral palsy, epilepsy, autism, early infant death. It's one of the leading causes of stillbirth. At that point, I did not dig too much deeper. I just was so focused on the baby before me and her heartbreaking beauty and her there-ness. She was who she is. Yet I was just sort of drowning in these unknowns. I get up to Alaska, which tends to be a fairly lonely place for me. Sitka is on an island that's very foggy. While we have good friends there, it's just a challenge for me to be there with the domestic imbalance of the fishing life. I called the doctor. The nurse answered. She said, "I don't have the authority to tell you the test results. Dr. Kono is going to call you tonight from home." I was like, what does that mean? What? I hung up. Then a couple seconds later, my phone rang. She said, "This is Suzy. She has congenital CMV." She said, "I have to tell you the results [distorted audio]. She tested positive for congenital CMV."

That began the journey of research and parenting and really just this new understanding of the capacity of motherhood that I had not really known with my firstborn. I went to the library as soon as I could when my husband was home. My mom was there to help me with the kids too. I would flee to the library. I started doing this research. While I was there, I discovered that CMV is the leading cause of birth defects. It is contagious in the saliva of one out of three toddlers. Obstetricians are intentionally not talking about it with women because the American Congress of Obstetricians and Gynecologists has stood behind their statement that knowing this, knowing to do some simple things during pregnancy, if you have a toddler, which makes you high risk, for contracting CMV, they say that this would be impractical or burdensome to know about it during pregnancy. I just found that entirely unethical, obviously. I found it really stunning that so many babies could have this disease and there was not a book about it. I just knew that I had to write the book.

We figured that out, that I would be devoted to writing and I would stay home because Anna would end up needing all these therapies. We did find out very shortly thereafter that she is profoundly deaf. She's remarkable. I started to spend a lot of time with families whose children were disabled. I just found this new subculture of parenting that I had not found visible in narratives, in images, in health care that said all of these children are of value and that pregnancy should begin with that kind of foundation, that we cannot prevent everything, or should we be, during pregnancy, but we should know about this leading risk to our pregnancies so that we can prevent stillbirth and life-threatening disabilities. As time went along, the book really started to become about other families and about this new side of motherhood where I was really navigating all that I had known as a hearing mother into how to raise a deaf child and how to make these decisions in her silence and honoring her silence and also bringing her along into our lives with us.

Zibby: Oh, my gosh. Megan, what a story. Just living through that would be enough, but to then also write a book at the same time, it's not just like, oh, I'm just going to stay home. The amount of stuff you were having to deal with, it's hard to write a book anyway, even if everything's fine. It's really incredible.

Megan: Thank you. It was not a short process. The book took me about eight years to write. It accumulated. A lot of people tell writers, you need to write every day. For me, writing is very seasonal. It has to do with where my kids are at their current moment in time, where I am at my current moment in time. I've always felt like if I'm thinking about it deeply, that counts too. If I'm reading something that connects to the writing, that counts too. I use the notes apps in my iPhone to write. You probably do too. Sometimes it's a sentence in a month. Other times, I bang out ten thousand word a day. It's just a mysterious process for me. It's not very clean or organized. It just happens. Then there's a lot of revision.

Zibby: How did you link up with Cory, who works for Zibby Books?

Megan: Oh, my god. Cory Hunter was a huge force behind the final product of the book. In the book, towards the end of the book, I tell this story. I had been working on it for not very long. I ran into a friend who said, "You got to just send it out. Just send it to the biggest agent that you find in New York." I did. It was just a partial manuscript. It was fifty pages. We went out with it. It just wasn't ready. It was pretty heartbreaking. We got so many rejections back. This was when Anna was about two. She was flourishing. I was able to devote some more time to writing than I imagined I would be able to. Then this new journey of grief in the rejection of the story started to come into our story. I took a big break after it had been rejected. A lot of the feedback from smaller houses was, this issue is too large for us to take on and do it justice. Then there was some sort of odd superstition. My agent told me people thought if they took on this book about CMV, their child would end up with CMV, which is so ironic because all the studies have shown if you know about CMV, you're eighty percent less at risk of contracting it. I just had to deal with these weird situations, and continue to. There's just a lot of pushback to know about it because it is an inconvenient truth. It's this ubiquitous virus that is avoidable and yet has always been here and will remain.

Anyway, I decided to just take a step back. In that stepping back, I thought, I need to find somebody who can really look at this. Everybody who had seen it, they liked the writing. They thought the story was ripe for the public and necessary. Cory, I think she consulted for a nonprofit that I had worked for in Colorado. I ran their education program in schools, sending writers into schools for eight weeks to teach on behalf of English teachers. The director of that nonprofit said, "You should talk to Cory Hunter." Cory took on my project. I said, "I just need to know why this won't sell. I need to make it sellable. I need to go back out with this." Some people had said, you need to just put it away. Start another book. I was like, I can't. This is so critical for people to know about this. These studies have shown that ninety percent of women don't know CMV exists. Cory looked at it. She said, "You need a new structure." I had gone out with this three-part structure that was somewhat vague. There wasn't a great thread running through the book. Writers call it the through line. It just wasn't quite working. She also said most nonfiction books sell on proposal, which I didn't know. I had gone out with the narrative. I really didn't want to. At the time, I now had three kids. I was like, a proposal? A proposal is a hundred-plus-page Word document. I don't have time to basically write a small book about the book that I will then need to write, but I decided I needed to. It took me about a year and a half.

Under Cory's very insightful and grace-filled guidance -- she's just so humble and so perceptive. We put this proposal together. With her help, we really looked at -- in the proposal, you have to designate an audience. I was like, I don't mean to sound hubristic or anything, but my audience is everyone. Everyone knows someone who will be pregnant. Everybody is in favor of creating the healthiest environment possible for bringing children into the world, so really, everyone, grandmothers, uncles, brothers, women, children. My oldest daughter has actually read my book. She's eleven. And high schoolers, when they're really starting to learn about human development and things that can disrupt it. We went out with the proposal. I found a different agent. We sent it back to some of the editors who had seen it originally as the partial manuscript. One was Kris Puopolo at Doubleday, who said, "I remember seeing that. I want to take a second look." She made me an offer. It was just an incredible moment, probably one of the happiest of my life, besides giving birth to my children.

Zibby: Wow, what a story. Oh, my gosh, that's amazing. Now that the book is out, how do you feel with your story being out there? What are the things, by the way, that -- not "by the way." This is of critical importance. What are the takeaways that everybody, every uncle, everybody in the world needs to know to prevent this from happening? Maybe let's start there.

Megan: CMV is this everywhere virus that affects about fifty to eight percent of the US population. Before you're forty, you've probably caught CMV. If you're pregnant, you're always at risk. Even if you've had it before, you can catch a new strain of it. Really, the simple guidelines are -- CMV is spread through direct contact. It's not airborne like COVID. You have to get the saliva of somebody who has CMV directly in your mouth, or urine. Those are the two primary transmission routes. Stay-at-home caretakers are specifically at risk because toddlers are constantly shedding fluids. For some reason, if an adult has CMV, they only carry it for a week, but a toddler can carry it for up to forty months. It's not dangerous at all if you're out of the womb, basically, unless you're undergoing an organ transplant. Then it can be very dangerous. It's only dangerous in the severely immunosuppressed or to a fetus during pregnancy, who is immunosuppressed and in the midst of rapid development.

During pregnancy, the guidelines are to just kiss your toddler on top of the head rather than on the lips, to not finish their snacks. I know that is the go-to method of feeding yourself when you're pregnant, is to finish the macaroni and cheese. I have five kids now. I had three after having Anna. I always practiced these measures. Really, I think they've become more normal after COVID, to just be aware that the people in your house could be carrying something that you really don't want when you're pregnant. Just eat your own food. Use your own toothbrush. Use your own chapstick. When I'm pregnant, I just tell my kids, my water bottle is my water bottle. I don't want your germs when I am pregnant. That can greatly reduce your risk. Women have shown in surveys time and time again, they want to know about CMV. They're willing to do these things during pregnancy in order to reduce their risk of contracting it. Really, also, just the discussion of CMV is greatly lacking in the US because once these children are born, less than ten percent are ever even diagnosed with the disease and offered the opportunity to be treated. It's this systemic problem. Not knowing about it is creating these problems that we are failing to address on a global level with this disability-causing illness.

Zibby: Aside from the book -- I know this is a major cause for you. How are you advocating, letting people know, teaching? What are the steps you're taking to spread the word about this? Thank you, by the way, for all of the good that you're doing in the world.

Megan: Thank you. In Colorado, in the process of realizing how few babies are actually tested for CMV, I went back to the hospital where Anna was born. There's two ways to approach screening newborns for CMV. One is doing targeted testing, which a lot of states have begun to do, whether that's legislatively mandated or not. That means testing them if they have any sign of CMV at birth. At the hospital where Anna was born -- it's called Lutheran. We overhauled their newborn program that if a baby is born like Anna, underweight -- there's specific standards, of course. If they're full term and underweight or in the NICU, if they have a disproportionately small head size or if they fail their hearing test, that should trigger a test for CMV in the hospital. One of the big problems is if that test is not done in hospital, that baby can go home and then catch postnatal CMV from a toddler who has a cold. Then you really don't know if it was contracted congenitally and can be causing progressive hearing loss or blindness or any kind of cognitive delay. Targeting testing tests them if they have a symptom.

The better way to do it -- this is at work in a lot of states -- is to universally test all newborns for CMV. Here's why. Most children with congenital CMV, which means from birth, they are born asymptomatic. If we only test these children who have symptoms, we're missing forty-three percent of children who could go on to lose their hearing. It is true that most children who are born asymptomatic will not have as many permanent impairments as those who are born symptomatic. Still, we should be catching those who could go on to become deaf by the age of three or four. We now have this system in place with a more sensitive newborn dried blood spot. It's already in place. Every baby born in the US has their little heel pricked, and they stamp it on the card. Now after just recently, last year, a new assessment of that blood spot was done. We now know that it is pretty sensitive at picking up CMV in the blood. It didn't used to be. That was one of the naysayers' points for many years. We don't have a cost-effective, easy way to test that many newborns. It isn't perfect. There's a doctor in Minnesota named Dr. Mark Schleiss who is now testing all newborns in Minnesota. He says, "We can't let the perfect be the enemy of the good here. If it's not perfect, in ten years, it might be. In the meantime, we are diagnosing children. We are giving families that name," which is so important to their identity. They're finding a community and the proper treatment of these children.

I'm involved with some organizations that are really pushing for universal screening broadly in every state. One of those is the National CMV Foundation. Today, Minnesota, as I said. Connecticut is starting universal screening in 2025. The state of New York just began a one-year pilot program. New York is testing all of their newborns born there for the year. Then they're going to assess their data. Then four Canadian provinces do universal screening. Canada just tends to be more aggressive with it with less pushback. Go Canada. For me, just trying to get my writing places so that people can read about our families and see the marvel that is our children and see the losses, these deep, deep losses of the children who have died from CMV, and to just know our story and know our kids' importance and to read it deeply. One place I arrived at in my book was this lack of narrative medicine in the medical field. That is doctors spending time to know the whole story of each patient. I really found that that was not just lacking for CMV, the story behind it and the historical silence for people to understand it, but just in general, we're seeing this breakdown of the doctor-patient relationship because the full story is often not there due to time constraints and HIPAA and all kinds of other historical reasons. When we put narrative and story back into that relationship, it's very healing for doctors, no matter the time it takes. It actually saves money in terms of patients not walking away from that practice because they don't feel understood and not being willing to go through with treatments because they don't feel heard. The book really ends with this proposal to use the opportunity of CMV to fix the lack of narratives in general in medicine.

Zibby: Wow, this is amazing. What fantastic work. I hope you get some sort of presidential medal of something or other at some point for the work you're doing. It's, societally, really beneficial and pretty awesome.

Megan: Thank you. There are so many people. These infectious disease doctors, they're so heroic. They've been working on this disease that has basically been denied and dismissed since the fifties when it was identified. They just so steadily push forward against total resistance. I go to a lot of medical conferences to meet these doctors. They're just incredible humans. For sure, they deserve medals as well. Some have obtained them. I would love the light to shine on them at some point.

Zibby: Do you have any advice for aspiring authors?

Megan: I would just say, for me, I loved finding your podcast because even when we don't feel we have the time to make something or to contribute something, there are ways to do it. If somebody had told me that I would be writing this book in the process of having five children, I would've been like -- if somebody told me that when I had one, I would be like, no way. My life is inundated with tasks and everything that I need to do. Yet when you really want something, you can make the time for it. It doesn't have to look like anybody else's time spent. It can just be the way that you do it. It might take twelve years, but that's okay. Somebody had told me that it takes a writer about ten years to write their first book. I think we live in this way that we see things just coming immediately to fruition for other people. We want that fast turnover and no delayed gratification. It's a lengthy work. I think the really deep works can take a long time even to just germinate, so to be patient and trusting in yourself and to not give up. For me, I had, probably, more rejections than most books that are on the market. It ended up becoming a book. Keep writing.

Zibby: I love it. Thank you so much for coming on. I really appreciate it.

Megan: Thank you, Zibby. Thanks. It was my honor.

REMEDIES FOR SORROW: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother's Pursuit of the Truth by Megan Nix

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