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Join Megan Nix, a writer and author of Remedies for Sorrow: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother’s Pursuit of the Truth. Megan shares her deeply personal journey and research into congenital CMV, shedding light on the importance of awareness during pregnancy and the need for transparency in health care.

Megan Nix is a writer.

She discusses her book, Remedies for Sorrow: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother’s Pursuit of the Truth.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. Today we welcome Megan Nix. She’s the author of the book Remedies for Sorrow: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother’s Pursuit of the Truth. Megan, welcome to the show.

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

Kevin Pho: So I know your book encapsulates your story and journey, but just briefly share it before we talk more about that book.

Megan Nix: Sure. So my second daughter was born in 2015, and she was born small for gestational age, she had microcephaly, she ended up failing her in-hospital hearing tests. And 10 days later we found out that she had congenital CMV, and that I had likely contracted the virus while I was pregnant from my toddler, who was two years old during my pregnancy.

And when I went to the medical literature, I could find studies written by doctors about CMV, but I could not find a narrative about it, despite its prevalence, and despite the fact that I found out that it disabled more babies than any other infectious disease, and was in fact in many studies listed as the leading cause of birth defects in the United States. So I was shocked that I had never heard about it, being well educated and already having been through a prior pregnancy.

And I decided I needed to write the book. There was just not enough information for people of childbearing age to know that CMV exists, to know what the experience is of giving birth to an exceptional child, and to really investigate the historical silence that I was seeing surrounding the disease.

Kevin Pho: So before we talk about the book, just give my audience some context. What is congenital CMV? Tell me about the risks to infants, and tell us what you knew about it going into this journey.

Megan Nix: Well, I knew nothing about it, and studies have shown that 90 percent of women have never heard of CMV. And so it’s a ubiquitous virus, it’s generally harmless in the population, so 50 to 80 percent of adults have had CMV by the time they’re 40. If a person’s severely immunosuppressed, like undergoing an organ transplant, that medical community is very aware of CMV because it can be fatal if the transplant is seropositive and the recipient is seronegative. And generally I think CMV is really associated with organ transplants in the medical community, so medical practitioners know about CMV.

But in utero and in the prenatal world, there’s a lot of evidence that medical students in all years of their education are deficient in their understanding of CMV. And it turns out it affects one in 200 babies, which is a drastic amount compared to the things that we know about during pregnancy as mothers. Toxoplasmosis, the kitty litter disease, affects one in 10,000.

And so I was just really shocked that of those one in 200, one out of five will have permanent impairments. And in my experience this was often sort of dismissed, like, well, most babies with CMV are fine and it’s super rare. But it’s not rare, and 20 percent is nothing to scoff at, it’s a substantial amount. And so translated into the US, that’s more babies disabled than by any other congenital disease.

So the big kicker too is that toddlers are the primary vectors. So one out of three toddlers, according to the CDC, is shedding CMV, and they will shed it for up to 40 months, which makes daycares and mothers with young children at home pretty high-risk environments.

And of course we cannot fully prevent any kind of contagious infection, but because CMV is transmitted by direct contact, certainly we could be honest and say, if mothers and fathers and any caretakers know that the saliva of a toddler could be harboring a disabling infection, we would do our best to reduce our chances of it. And most of us CMV parents never had that chance, and so it leaves us with a lot of resentment and a lot of wishful thinking.

And there’s a doctor whose child has CMV, she’s a developmental pediatrician and her third was born with CMV, her name is Dr. Megan Pesch, and she said, even if it happened, which it very well could have, I would have been less angry about that result.

Kevin Pho: And for those who aren’t familiar, what CMV stands for, it stands for cytomegalovirus. You wrote your book Remedies for Sorrow: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother’s Pursuit of the Truth. So just to be clear, is CMV typically screened for at all in the prenatal stage? You mentioned that it was a complete surprise to you, it wasn’t mentioned by your obstetric team.

Megan Nix: It’s generally not tested for during pregnancy, and I actually agree with that stance. I do not believe that we should be screening every pregnant woman for CMV, there’s a lot of problems with the testing during pregnancy.

However, if there are abnormalities on ultrasounds, which my daughter had, she had microcephaly on a 36-week ultrasound, then it could be important to test during pregnancy to see if the baby potentially has that. There’s some emerging data that there’s an antiviral that may stop the virus from transmitting to the fetus from the mother, and may actually help with developmental outcomes if given in utero, but these are studies in Israel and France right now.

So really we don’t have perfection during pregnancy, we really don’t, and we don’t want people to think that this is something that should prevent them from trying to have children. It has existed since humans have been around. However, the discussion during pregnancy should be had, because not having it takes away our agency to protect our children in utero.

And so really the issue is talking about it during pregnancy, so that if the baby is born symptomatic they are diagnosed and they have the opportunity to receive treatment. Because the treatment for congenital CMV needs to be administered during the first month of life, and it needs to be diagnosed during the first month of life, because otherwise it’s a postnatal infection and that child might have just gotten a cold from a sibling.

And so early identification and treatment is severely lacking. I think less than 10 percent of babies born with CMV ever receive a diagnosis or treatment. And the treatment, valganciclovir, has proven successful at stopping the progression of the virus in the brain, and improving cognitive outcomes, and in stopping the progression of hearing loss. That being missed is really unfair for some of these children who are in the NICU, get sent home with a diagnosis, and are never offered treatment, just because there’s such a dearth of information about CMV.

Kevin Pho: Now, for those who read your book, what are some of the main messages that you want them to come away with?

Megan Nix: So first, that no matter what kind of outcome you have after being pregnant, you will love your child. I think my preparation during pregnancy was to do all the right things so that I could control what my child would be like. And in truth, having a daughter who’s deaf and who had delays from birth really enriched our experience of parenting, and I think our obstetrical care is not really angled that way.

And I think a huge part of my book is about the dignity of all children and the value of disabled children. And it’s also about this wild spectrum of CMV that presents a lot of pain and a lot of beauty, and I think that can just be delivered differently in obstetrics.

Also, really the book is a love story about our daughter, and it’s about our life on a small island in Alaska where my husband fishes, and that’s where we received her diagnosis, was in this place absent of pediatric specialists and audiology equipment. And yet our doctors in this small town, it’s called Sitka, Alaska, they really practiced this slow medicine that valued us and that saw our family in its entirety.

And I started to see that all of our providers, both in Denver where we live most of the year and in Alaska, could kind of be divided into these two groups: the doctors who sort of rushed through the appointments, and the doctors who practice something along the lines of narrative medicine, which I discovered as I was writing the book. And that approach of really capturing our story and listening to the story of CMV, which has basically been unvoiced since the 1950s when it was first grown in culture, that relationship, that give and take between doctor and patient, was a joy for both our doctors and for us.

And the book is actually very hopeful, despite the tragic nature of my daughter’s disease. The book is really about doctors and patients finding each other, and I think that CMV is a place where we could set a powerful example of learning from each other.

Kevin Pho: Why do you think not enough clinicians talk about CMV?

Megan Nix: Well, I think there’s multiple reasons this isn’t happening. I think it is sort of an embarrassment, it’s not been talked about. And most people who I tell about CMV, it’s like if you meet somebody who’s pregnant and you’re like, OK, have you ever heard of CMV, and they haven’t. It’s an inconvenient truth that our toddlers are carrying this potentially disabling substance in their bodies, and yet 90 percent of women in studies do want to know about it.

So I think there’s just some discomfort, and I think some doctors really want to care for their pregnant patients and don’t want them to worry about one more thing. In fact, when I went to my OB and I said, how did I not know about this, he said, women won’t want to worry about one more thing. And this is where the idea of benevolent deception arose in my awareness, which is, there is benevolence in doctors, there is this desire to care for patients, and yet omitting information that could lead to a stillbirth is unethical. And we do want to know, we have said in a quantitative way we want to know.

And ACOG, the American College of Obstetricians and Gynecologists, continues to say we don’t need to be discussing this with women because the measures to prevent CMV would be impractical and burdensome. And I think that is really impeding our progress to bring CMV awareness and to diagnose and treat more children.

Those hygienic measures are very easy to put into place, much easier than preventing COVID or something that’s airborne. It’s basically, don’t use your toddler’s toothbrush during pregnancy, kiss them on the top of the head instead of the lips, don’t finish their snacks. And sure, these are adjustments and they’re not perfect, and yet we want to know. These are things that are more doable and more important than avoiding kitty litter, to be honest.

And so this is why I wrote a book about it. There’s a lot of historical reasons. After Thomas Weller grew CMV in culture and named it, other doctors were publishing articles in prominent medical journals saying we’ll never be able to prevent this, we should essentially wash our hands of it. And Thomas Weller said, this is incorrect, we need to continue to study this virus. There’s a doctor at the CDC, Dr. Mike Cannon, who in 2005 said CMV presents more possibilities of improving children’s outcomes than any other disease.

And yet we’re really fighting against this historical silence and this historical misunderstanding and dismissal of the disease. And so it’s very complicated, and the disease itself is complicated. We can’t eliminate it like we could measles, it’s a more complex infection than many. There’s thousands of strains of it, so there’s trouble with a vaccine, there’s trouble with the social import of where it lives, in toddlers. So just a perfect storm of something that can be sort of put under the rug rather than dealt with.

Kevin Pho: Tell us in general what the reaction was from the medical establishment to your book.

Megan Nix: I’ve actually had a very positive reception, and that’s been the case in my life too. When I tried to change the newborn screening program at the hospital where my daughter was born, there was a neonatologist there, her name is Dr. Yore, and she was opposed to changing the screening program. We were aiming to start with targeted testing, which is testing the babies who have a red flag at birth and are symptomatic for CMV, such as a failed hearing test, microcephaly, small for gestational age. And she just said, there’s too few babies, this is too expensive to figure out.

And I just started conversing with her by email and sending studies, and she became such a champion of the CMV cause. And I see that again and again, that there is this sort of pushback, and I often think that’s just a lack of exposure to the truth. And the more that I’ve spent time with doctors who are really not acknowledging of the situation, the more pliable they become, the more time they spend within the literature and the experience of CMV.

Also there’s a huge body of infectious disease specialists and CMV doctors who’ve been working on this and who’ve devoted their lives to it, and I’ve been to a number of CMV conferences, and they’ve been hugely supportive of the book, because this is work that they know must be done. This is an urgent public health issue, and these are people who are in the field. If this could not be prevented, if it wasn’t important, they would not be in the specialty that they’re in.

And so in general I’ve just kind of focused on people who can move this forward and not on the people who seem unbudgeable. One of the pediatricians, she said to me, it was at this dinner she hosted about CMV, she said, what could doctors have done to have supported you better in your journey with CMV? And that was deeply touching, because it took a lot of humility for her to stand there and say essentially, what could we have done better as doctors for you? And it kind of took me aback, and her question itself is, what was missing from my care, how could we be serving women better when it comes to this issue?

And I think certainly education during pregnancy is our choice, and if the vast majority of women say they want to be educated and doctors have this information, it needs to be presented to us. It’s actually banned by the American Medical Association to withhold critical information from fully cognitively functioning adults.

And so I think just having that upfront conversation of the risk of CMV, especially if you have a young child at home, is a question that doctors could present to women, and to people in clinic who are expecting to conceive or who are already pregnant or who have a toddler at home, and say, there is a disease called CMV, do you want to know about it? It can cause deafness, blindness, cerebral palsy, epilepsy, autism, stillbirth, early infant death. What person is going to say, no thanks, I don’t want to know about that?

Kevin Pho: We’re talking to Megan Nix. She’s the author of the book Remedies for Sorrow: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother’s Pursuit of the Truth. Megan, let’s end with some of your take-home messages that you’d like to leave with the KevinMD audience.

Megan Nix: I just think everybody has a right to know about CMV, and everybody also has the gift of our children in the world, and they’re a marvel and they’re remarkable. And yet we should be preventing life-threatening cases of congenital CMV any way possible.

Kevin Pho: Megan, thank you so much for sharing your story, time, and insight, and thanks again for coming on the show.

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