Megan Nix, REMEDIES FOR SORROW: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother's Pursuit of the Truth
[0:04]Welcome to Moms Don't Have Time to Be Books with Zippy.
[0:07]I'm the host, Zippy Owens, I am an author, my latest is blank, pub date March 1st,
[0:12]a novel.
[0:13]I'm also a podcaster, obviously, a publisher, a bookstore owner, and so much more.
[0:19]If you love books, you're in the right place.
[0:21]In fact, we call it the Zippyverse, or really, the LA Times called it the Zippyverse,
[0:26]and we're going with it.
[0:27]Go to Zippy Owens.com to learn more, and follow me on Instagram at Zippy Owens.
[0:33]Megan Nicks is the author of Remedies for Sorrow, an extraordinary child, a secret
[0:37]cap from pregnant women, and a mother's pursuit of the truth.
[0:40]Megan is a mother of five.
[0:42]Her work has appeared in The New York Times, The Washington Post, The Boston Globe,
[0:45]The Denver Post, and elsewhere.
[0:47]She regularly speaks to medical audiences and hospital systems about congenital C.M.V.
[0:52]and was the keynote speaker at Moderna Inc. in March of 2020.
[0:56]Megan and her family divide their time between Colorado and Alaska, where her husband
[1:00]fishes for a living.
[1:01]Welcome, Megan.
[1:02]Thank you so much for coming on Moms.
[1:04]Don't have time to read books to discuss your memoir Remedies for Sorrow, an extraordinary
[1:08]child, a secret cap from pregnant women, and a mother's pursuit of the truth.
[1:13]Welcome.
[1:14]Thank you so much for having me, Zippy.
[1:16]So tell listeners about your story, about your daughter, about what happened, your advocacy,
[1:23]all of it.
[1:24]Just start from the beginning, and of the fact that you live in Alaska in Colorado, and
[1:29]you're such a, this is amazing, like the backdrop of the story is just sensational.
[1:34]So okay, go for it.
[1:36]Okay.
[1:37]So I'm in Colorado now, and yes, we live in Alaska for about four months of the year
[1:43]during salmon fishing season where my husband's professional fisherman in sick, Alaska.
[1:50]And in 2015, I was pregnant with our second child, and I had a pretty typical pregnancy
[1:58]until 36 weeks.
[2:02]And I stayed typical, but intuitively, I knew something was different, and I would turn sideways
[2:08]in the mirror, and I just looked small to myself.
[2:12]And my OB and the midwives at the practice that I go to where you kind of cycle between
[2:16]them, they just said, oh, there's a, you know, a large margin of error when we do the
[2:22]a fundal measurement, and you look great.
[2:24]And then at 36 weeks, it turned out the baby had microcephaly.
[2:29]So her head was disproportionately small to her body.
[2:33]And from that point forward, everything changed.
[2:36]When I gave birth to her at 40 weeks, she came out and she was completely silent.
[2:42]And she had these deep black eyes that just like bored into me, and I knew she was alive,
[2:49]but she just totally rocked me with both off and this drying back, knowing that there was
[2:56]something that was not voiced about her.
[2:59]And this continued to be the case.
[3:01]So I could also see that she was remarkably small, and it turned out she was five pounds
[3:06]at 40 weeks.
[3:08]She went on to fail all of her in hospital hearing tests.
[3:12]And the rotating pediatricians would do their assessments of her, but they were also
[3:18]very silent.
[3:19]And I would say like, is everything okay, is everything okay, and they just seemed sort
[3:23]of perplexed, but not forward with any kind of testing or questioning.
[3:30]And so we were discharged from the hospital.
[3:33]And at 10 days, I went to her first pediatric appointment at the pediatricians office.
[3:39]And we had actually moved it earlier than the typical two weeks because we were, I was
[3:45]leaving for Alaska the next day with my mom and my daughter's, my husband had missed
[3:50]her birth and was already efficient.
[3:52]And he's a very involved dad, but we had decided that I would have her in Colorado because
[3:57]they didn't want to have a second C section and recover from surgery during his like seven
[4:02]days a week working schedule in Alaska.
[4:05]And so the pediatrician looked at her failed hearing tests and her size.
[4:12]And he said, I want to test her for this common, but little known virus called CMV.
[4:18]And I thought CMV was just like the flu or you know something and that was going to be
[4:23]quickly passing.
[4:25]And I said, well, what do you do if she had it?
[4:29]And he said, well, if she had it, then there's an aggressive medication that she needs
[4:34]to take.
[4:35]And he didn't reveal the spectrum at that time, but I said, I need to be with my husband
[4:40]and I'd like to leave for Alaska tomorrow.
[4:43]And he said, I think you should still go.
[4:45]You'll get the results when you're up there and a pediatrician there can direct your care.
[4:51]So he tests her and it's a nine base of test or I might not have done it.
[4:55]It's just a urine catch.
[4:56]They tape what the nurse called a potty purse onto the baby's hips and she peed and it went
[5:02]to the lab.
[5:03]We got to Alaska.
[5:04]I sort of like, well, prior to leaving for Alaska, of course, a Google CMV.
[5:10]And it opened this deep, dark hole and it was basically this congenital condition that
[5:21]I could have passed onto the baby in utero that can cause deafness, blindness, cerebral
[5:29]palsy, epilepsy, autism, early infant death.
[5:34]And it's one of the leading causes of stillbirth.
[5:38]And at that point, I did not dig too much deeper.
[5:41]I just was so focused on the baby before me and her just sort of heartbreaking beauty
[5:48]and her thereness.
[5:51]You know, she was who she is and yet I was just sort of drowning in these unknowns.
[5:57]And so I get up to Alaska, which tends to be a fairly lonely place for me.
[6:01]Sitka is on an island that's very foggy and while we have good friends there, it's just
[6:06]a challenge for me to be there with sort of the domestic imbalance of the fishing life.
[6:12]And I called the doctor and the nurse answered and she said, I don't have the authority
[6:19]to tell you the test results.
[6:21]Dr. Kona was going to call you tonight from home and I was like, oh, what is that?
[6:27]Like what?
[6:28]And so I hung up and then like a couple seconds later my phone rang and she said, this
[6:35]Susie, she has congenital CMB.
[6:38]She said, I have to tell you the results we heard.
[6:41]She has she tested positive for congenital CMB.
[6:46]And that began the journey of research and parenting and really just this new understanding
[6:54]of the capacity of motherhood that I had not really known with my first born.
[7:00]I went to the library as soon as I could when when my husband was home and my mom was there
[7:06]to help me with the kids too.
[7:07]So I would flee to the library and I started doing this research and while I was there,
[7:12]I discovered that CMB is the leading cause of birth defects.
[7:16]It is contagious in the saliva of one out of three toddlers.
[7:20]And obstetricians are intentionally not talking about it with women because they say
[7:26]that the American Congress of Obstetricians and Gynecologists has stood behind their statement
[7:33]that knowing this, knowing to do some simple things during pregnancy, if you have a toddler which
[7:38]makes you high risk for contracting CMB, they say that this would be impractical or burdensome
[7:45]to know about it during pregnancy.
[7:48]And I just found that entirely unethical, obviously.
[7:53]And I found it really stunning that so many babies could have this disease and there was
[7:59]not a book about it.
[8:00]And so I just knew that I had to write the book and we just sort of figured that out that I would
[8:09]be devoted to writing and I would stay home because Anna would end up needing all these therapies.
[8:15]And we did find out very shortly thereafter that she is profoundly deaf and she's remarkable.
[8:22]And I started to spend a lot of time with families whose children were disabled.
[8:27]And I just found this new subculture of parenting that I had not found visible
[8:33]in narratives, in images, in healthcare that said all of these children are of value.
[8:41]And that pregnancy should begin with that kind of foundation that we cannot prevent everything
[8:47]or should we be during pregnancy, but we should know about this leading risk to our pregnancies
[8:55]so that we can prevent still birth and life threatening disabilities.
[8:58]And so as time went along, the book really started to become about other families and about
[9:06]this new side of motherhood where I was really navigating all that I had known as a hearing mother
[9:13]into how to raise a deaf child and how to make these decisions in her silence and honoring
[9:21]her silence and also bringing her a longing to our lives of a best.
[9:26]Oh my gosh, Megan, what a story. I mean, just living through that would be enough, but to then
[9:32]also write a book at the same time. I mean, it's not just like, oh, I'm just going to stay home.
[9:36]And I mean, the amount of stuff you were having to deal with. It's hard to write a book
[9:40]anyway, even if everything's fine. So it's really, you know, it's really incredible.
[9:46]Thank you. It was not a short process. So the book took me about eight years to write.
[9:52]And it just sort of, you know, it accumulated. I feel like there were times a lot of people tell
[9:58]writers, you need to write.
[10:00]every day. But for me, writing is very seasonal and it has to do with where my kids are at their
[10:06]current moment in time where I am at my current moment in time and I've always felt like if I'm
[10:11]thinking about it deeply, that counts too. And if I'm reading something that connects to the writing
[10:18]that counts to and sometimes I would get, I use the notes app in my iPhone to write, you probably
[10:24]do too. And sometimes it's like a sentence in a month. And other times it's like a bang out
[10:32]10,000 words a day. So it's just sort of a mysterious process for me. It's not very clean or organized.
[10:39]It just happens and then there's a lot of revision. How did you link up with Corey who works for
[10:45]something like that? So, yes, Corey Hunter was a huge force behind the final product of the book.
[10:52]So, in the book, towards the end of the book, I tell this story that I had, I had been working
[11:00]on it for not very long and I ran into a friend who said, you've got to just send it out, just send
[11:05]it to the biggest agent that you can find in New York. And so I did. And it was just a partial
[11:12]manuscript. It was like 50 pages and we went out with it and it just wasn't ready. And it was
[11:18]pretty heartbreaking. We got like so many rejections back. And this was when Anna was about to. And so
[11:25]she was flourishing and I was able to devote some more time to writing than I imagine I would be able
[11:31]to. And then this new journey of grief in the rejection of the story started to come into our story.
[11:39]And I took a big break after it had been rejected. And a lot of the feedback from like smaller
[11:46]houses was this issue is too large for us to take on and do it justice. And then there was some
[11:53]like sort of odd superstition. My agent told me that people thought if they took on this book about
[12:00]CMB, their child would end up with CMB, which is so ironic because all the studies have shown
[12:06]if you know about CMB, you're like 80% less at risk of contracting it. So, I just had to kind of
[12:12]of deal with these weird situations and continue to. There's just a lot of pushback to know about
[12:18]it because it is an inconvenient truth that it's this ubiquitous virus that is avoidable and yet
[12:24]has always been here and we'll remain. And so anyway, so I decided to just kind of take a step back
[12:31]and in that stepping back, I thought I need to find somebody who can really look at this because
[12:38]everybody who had seen it, they liked the writing, they thought the story was right for the public
[12:43]and necessary. And Corey worked for, I think she consulted for a nonprofit that I had worked
[12:51]for in Colorado. I ran their education program in schools sending writers into schools for like
[12:56]eight weeks to teach on behalf of English teachers. And the director of that nonprofit said,
[13:02]you should talk to Corey Hunter. And so Corey took on my project and I said, I just need to know
[13:08]why this won't sell and I need to make it sellable. I need to go back out with this. Some people
[13:13]had said, like, you need to just put it away, start another book. And I was like, I can't. This
[13:19]is so critical for people to know about this because these studies have shown that 90% of women
[13:26]don't know CMV exists. And Corey looked at it and she said, you need a new structure. I had
[13:33]gone out with this three-part structure that was somewhat big. And there wasn't a great thread
[13:39]running through the book. You know, writers called The Through Line. It just wasn't quite working.
[13:44]And she also said, most nonfiction books sell on proposal, which I didn't know. And I had gone out
[13:51]with the narrative. And so I really didn't want to. At the time I now had three kids and I was like
[13:57]a proposal, a proposal is a hundred plus page word document. I don't have time to basically write
[14:04]a small book about the book that I will be need to write. But I decided I needed to. And so it took
[14:10]me about a year and a half and under Corey's very insightful and just grace-filled guidance. She's
[14:17]is so humble and so perceptive. We put this proposal together. And with her help, we really looked at
[14:26]like there were certain moments in the proposal you have to designate an audience. And I was like,
[14:32]I don't mean to sound pubistic or anything. But my audience is everyone. Everyone knows someone
[14:40]who will be pregnant. And everybody is in favor of creating the healthiest environment possible for
[14:48]bringing children into the world. So really everyone, grandmothers, uncles, brothers, women,
[14:55]children. Like my oldest daughter has actually read my book. She's 11. And high schoolers,
[15:01]you know, when they're really starting to learn about human development and things that can
[15:05]disrupt it. And so we went out with a proposal. I found a different agent. And we sent it back to
[15:12]some of the editors who had seen it originally as the partial manuscript. And one was Chris
[15:19]Poopolo at double day who said, I remember seeing that. I want to take a second look. And she
[15:27]made me an offer. And it was just an incredible moment, probably one of the happiest of my life
[15:33]besides giving birth to my children. Well, what a story. Oh my gosh, that's amazing. Now that the
[15:39]book is out, how do you feel with your story being out there? What are the takeaways that everybody,
[15:46]every uncle, everybody in the world needs to know to prevent this from happening? Maybe let's
[15:50]start there. Sure. So CMB is this everywhere virus that affects about 50 to 80% of the US population
[16:01]before your 40, you've probably caught CMB. But if you're pregnant, you're always at risk because
[16:08]even if you've had it before, you can catch a new strain of it. So really, the simple guidelines are
[16:14]because CMB is spread through direct context. So it's not airborne like COVID. You have to get
[16:21]that saliva of somebody who has CMB directly in your mouth or urine. Those are kind of the two
[16:29]primary transmission routes. And stay at home caretakers are specifically at risk because toddlers
[16:36]are constantly shedding fluids. And for some reason, like if an adult has CMB, they only carry it
[16:43]for like a week, but a toddler can carry it for up to 40 months. And so it's not dangerous at all
[16:52]if you're out of the womb, basically, unless you're undergoing like an organ transplant, then it can
[16:57]be very dangerous. It's only dangerous in the severely immunosuppressed or to a fetus during
[17:04]pregnancy who is immunosuppressed and in the midst of rapid development. So during pregnancy,
[17:10]the guidelines are to just kiss your toddler on top of the head rather than on the lips to not
[17:15]finish their snacks. I know that's like the go-to method of feeding yourself when you're pregnant is
[17:22]to finish the macaroni and cheese. But I have five kids now. So I had three after having Anna,
[17:28]and I always practiced these measures. And really, I think they've become more normal after COVID
[17:34]to just like be aware that the people in your house could be carrying something that you really
[17:39]don't want when you're pregnant. So just eat your own food, use your own toothbrush, use your own
[17:44]chapstick. When I'm pregnant, I just tell my kids like my water bottle is my water bottle. I don't
[17:48]want your germs when I am pregnant. And that can greatly reduce your risk. And women have shown in
[17:55]surveys time and time again, they want to know about CMB and they are willing to do these things
[18:00]during pregnancy in order to reduce their risk of contracting it. And so really also just like
[18:06]the discussion of CMB is greatly lacking in the US because once these children are born, less than
[18:13]10% or ever even diagnosed with the disease and offered the opportunity to be treated. So really,
[18:20]it's the systemic problem of like not knowing about it is creating these problems that we are
[18:27]just failing to address on a global level with this disability causing illness.
[18:34]So aside from the book, I know this is a major cause for you. How are you advocating letting people
[18:40]now teaching? What are the steps you're taking to spread the word about this? And thank you,
[18:44]by the way, for all of the good that you're doing in the world. No, thank you. So in Colorado, in the
[18:51]process of realizing how few babies are actually tested for CMB, I went back to the hospital
[18:57]where Anna was born and there's sort of two ways to approach screening newborns for CMB. One is
[19:04]doing targeted testing, which a lot of states have begun to do, whether that's legislatively mandated
[19:11]or not. And that means testing them if they have any sign of CMB at birth. So at the hospital
[19:18]where Anna was born, it's called Lutheran, we overhauled their newborn program that if a baby
[19:24]is born like Anna and there's specific standards, of course. But if they're full term and underweight
[19:31]or in the NICU, if they have a disproportionately small head size, or if they fail their hearing test,
[19:38]that should trigger a test for CMB in the hospital. Because one of the big problems is if that test
[19:45]is not done in hospital, that baby can go home and then catch postnatal CMB from a toddler who
[19:53]has a cold. And then you really don't know if it was contracted congenitally and can be causing progressive
[20:00]loss or blindness or, you know, any kind of cognitive delay. So, so targeted testing tests them if
[20:08]they have a symptom. The better way to do it and this is at work in a lot of states is to universally
[20:15]test all newborns for CMB. Here's why. Most children with CMB with congenital CMB, which means
[20:22]from birth, they are born asymptomatic. And so if we only test these children who have symptoms,
[20:30]we're missing like 43% of children who could go on to lose their hearing.
[20:37]Now it is true that most children who are born asymptomatic will not have as many
[20:42]permanent impairments as those who are born asymptomatic. But still, we should be catching those who
[20:47]could go on to become deaf by the age of three or four. And so we now have the system in place with
[20:54]a more sensitive newborn-dried blood spot that we can use that. It's already in place. Every baby
[21:01]born in the U.S. has their low heel grip and they stamp it on the card. Well, now after just recently
[21:07]last year a new assessment of that blood spot was done, we now know that it is pretty sensitive
[21:14]picking up CMB in the blood. It didn't use to be. And that was kind of one of the naysayers points
[21:21]for many years was like, we don't have a cost-effective, easy way to test that many newborns.
[21:27]And it isn't perfect, but there's a doctor in Minnesota named Dr. Mark Schlace who is now testing
[21:33]all newborns in Minnesota. And he says, we can't let the perfect be the enemy of the good here.
[21:38]If it's not perfect in 10 years, it might be. And in the meantime, we are diagnosing children,
[21:43]and we are giving families that name, which is so important to their identity and their finding of
[21:49]community and to the proper treatment of these children. And so I'm involved with some organizations
[21:56]that are really pushing for universal screening broadly in every state. One of those is the National
[22:01]CMB Foundation. And so today, Minnesota, as I said, Connecticut is starting universal screening in
[22:07]2025. The state of New York just began a one-year pilot program. So New York is testing all of
[22:14]their newborns born there for the year. And then they're going to assess their data. And then
[22:19]four Canadian provinces do universal screening. Canada just tends to be more aggressive with it,
[22:24]with less pushback. So go Canada. And then, for me, just trying to get my writing places so that
[22:34]people can read about our families and see the marvel that is our children and see the losses,
[22:40]these deep, deep losses of the children who have died from CMB. And to just know our story and
[22:47]know our kids' importance. And to read it deeply, one place I arrived at my book was this lack of
[22:52]narrative medicine in the medical field. And that is Dr. spending time to know the whole story
[23:00]of each patient. And I really found that that was really not just lacking for CMB. The story
[23:06]behind it and the historical silence for people to understand it. But just in general, we're seeing
[23:11]this like breakdown of the doctor patient relationship because the full story is often not there
[23:18]due to time constraints and HIPAA and all kinds of other historical reasons. And that when we put
[23:25]narrative and story back into that relationship, it's very healing for doctors no matter the time
[23:31]it takes. And it actually saves money in terms of patients not walking away from that practice because
[23:39]they don't feel understood and not being willing to go through with treatments because they don't
[23:44]feel heard. So the book really ends with this proposal to use the opportunity of CMB to fix the lack
[23:52]of narratives in general in medicine. Well, this is amazing. What fantastic work. I hope you get
[23:59]like some sort of presidential medal of something or other at some point for that, for the work
[24:05]you're doing. It's it's decidedly really beneficial and pretty awesome. Well, thank you. And there's
[24:11]so many people. I mean these infectious disease doctors, they're so heroic. They've been working on
[24:16]this disease that has basically been denied and dismissed since the 50s when it was identified.
[24:23]And they just so steadily pushed forward against total resistance. And I go to a lot of medical
[24:30]conferences, you know, to meet these doctors. And they're just incredible humans and for sure
[24:37]they deserve medals as well. And some have have obtained them, but I would love the light to shine
[24:43]on them at some point. Do you have any advice for aspiring authors? I would just say, you know,
[24:49]for me, and I loved finding your podcast because even when we don't feel we have the time to make
[24:56]something or to contribute something, there are ways to do it. You know, if somebody had told me that
[25:02]I would be writing this book in the process of having five children, if somebody told me that when I
[25:08]have one, I would be like, no way. My life is inundated with tasks and everything that I need to do.
[25:15]And yet when you really want something, you can make the time for it. And it doesn't have to
[25:22]look like anybody else's time spent. It can just be the way that you do it. And it might take 12 years.
[25:29]But that's okay. Somebody had told me that it takes a writer about 10 years to write their first
[25:34]book. And I think we live, you know, in this way that we see things just coming immediately to
[25:40]fruition for other people. And, you know, we want that fast turnover and no delayed gratification.
[25:47]And it's a lengthy work. And I think the really deep works can take a long time even to just
[25:54]Germany. So to be patient and trusting in yourself and to not give up. I mean, for me, I had
[26:01]probably more rejections than most books that are on the market. And it ended up becoming a book.
[26:08]So keep writing. I love it. Well, thank you so much for coming on. I really appreciate it.
[26:13]Thank you, Zebi. Thanks. It was my honor.
[26:17]Thanks for listening to this episode of Moms Don't Have Time to Read Books.
[26:20]Don't forget to follow me on Instagram at Zebi Owens and at Moms Don't Have Time to Read Books.
[26:25]Also sign up for my newsletter at Zebi Owens.com and sign up for my virtual book club and meet lots
[26:30]of authors on Zoom every other week. Thanks so much to Steve and Ryan at Textures Sound for
[26:35]the Sound Editing. And thank you to Morning Moon Productions for providing this
[26:39]fantastic intro and outro music.