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Public health advocate Kathleen Muldoon discusses her article “Why congenital CMV should be on every parent and doctor’s radar,” revealing how congenital cytomegalovirus (cCMV) remains the most common viral cause of disability in the U.S., yet is often ignored in medical training, prenatal counseling, and public health policy. Kathleen explains how toddlers act as primary vectors, why prevention advice is rarely shared, and how early antiviral treatment can improve outcomes when the infection is detected in time. She outlines practical steps clinicians can take now, from incorporating prevention into prenatal visits to advocating for universal newborn screening, and calls for a cultural and educational shift to make cCMV awareness as routine as counseling on folic acid or listeria.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome back Kathleen Muldoon, physician coach and medical school professor. Today’s KevinMD article is “How motherhood reshaped my identity as a scientist and teacher.” Kathleen, welcome back to the show.

Kathleen Muldoon: Thank you. So honored to be here again.

Kevin Pho: All right, tell us what this article is about.

Kathleen Muldoon: So this article came to be in May. I think that’s important to notice because it’s a time when a lot of us are wrapping up our academic or fiscal year, and we have these evaluation forms that we have to fill out, kind of checking boxes about who we are and what we’ve done. I was sitting there in front of my laptop with the flashing cursor and looking at this and noticing, here we are in May, I am filling out this evaluation of my year, and Mother’s Day is in a couple of days. For me, thinking about who I am professionally and how that intersects with motherhood, I think that instead of filling out my form, I wrote this piece to kind of put myself in that place where I can see: I am both a scientist and a teacher, and a mother and a caregiver, and an advocate.

When you see these forms, and I think what we are trained to do in academia, in medicine, in training is this idea that you fill the boxes. But I don’t see myself in a lot of those boxes. In fact, through my particular form of motherhood, I’ve had to learn to bridge some of those boxes. It just brought out a reflection in me that our conceptualization of how caregiving—and I use motherhood because that’s my framework, but any kind of parenting or anything in our personal lives—is seen as extracurricular. A lot of times, that actually makes us who we are, and we bring that with us into our professional lives. I just wanted to kind of bring up some questions around that. So that’s where that piece came from.

Kevin Pho: All right, so tell us how all your identities, both professional and personal, intersect and how one draws from the other.

Kathleen Muldoon: So, my Ph.D. is in anthropology, and a lot of us end up in medical schools teaching anatomy, teaching various different forms of professionalism, and things like that. I have been teaching in med school for a long time, and embryology had been my teaching specialty. In the process of doing that, I had a son with a significant amount of medical complexity. He was born with a congenital cytomegalovirus infection. Even though I had been co-teaching with physicians—pediatricians, OB-GYNs—I knew that cytomegalovirus was the “C” in the TORCH screen, but I didn’t know anything else that was probably more relevant to know about it, about the dangers to a pregnancy, about how to avoid transmission.

Suddenly, I was thrown into a space where I had one foot in the disability world, one foot in medical spaces, and now also being thrown into medical spaces that I hadn’t known before as a caregiver to a significantly disabled child. Call it intellectualization, call it what you will, but I stepped into this space where I was like, “I have this language. I can read this literature. It’s within my access. And I see that we’re not talking about this the right way.” I experienced that there’s a known lack of knowledge about this virus in health care providers, and I experienced that academically and I experienced it in terms of accessing care for my son.

Because I couldn’t find a nice set of bridges in all of these different boxes, I had to become that. I found myself advocating for better education for CMV. I found myself advocating for my son. I found myself advocating that we incorporate it into undergraduate medical education and resident training. Because I had access to all of these spaces through my professional life, my passion for it came from my personal life. There was just blending because there had to be through this new role in advocacy that I found. I wasn’t just advocating for my particular son’s services, although I do that too. Those skills that I bring to and the passion with which I talk about it inform my work when I am in those training spaces for med students, residents, doctors, the pediatricians, OB-GYNs, and otolaryngologists who see CMV firsthand and still don’t have that lived-experience perspective.

The same questions that I ask when my son’s in the clinical setting, when I’m in the IEP, when I’m teaching my students—I’m honing those skills of how to ask questions. Motherhood and caregiving is where I hone those skills, and then I bring them with me everywhere. To me, that’s where I see that the gaps are filled. I’m not invited into—I do a lot of advocacy work at the state and national level, and I’m invited to those spaces as Dr. Muldoon, who happens to know a lot of this stuff professionally and has the lived experience that she can bring to share or to add that passion. It is very different than when I’m bringing those skills while embedded into these spaces, versus, “Can you bring your son along and we’re going to use him as a patient case?” That’s like “mom only.” But what I see, and what I think I share with a lot of your audience, is that these parts of our personal lives actually hone how we show up professionally. I just think we need to honor that.

Kevin Pho: So give us an example of that. Let’s say you were talking about CMV, cytomegalovirus, in a medical education setting. What would be an example of some of that lived experience that would inform your teaching and that you would share with the people that you were teaching?

Kathleen Muldoon: So a good example is CMV is not a typical part of undergraduate medical education. I think in most professions that intersect and have the opportunities to advise women about the dangers of contracting it during pregnancy, it is not a formal part of training. The advising bodies have waffled on whether this should be mandated to be part of, for example, prenatal visits. So a personal story that I can share, and that many people have shared with me because I am open about my lived experience, is saying something that is factual. So CMV can live on a surface for up to six hours. So, while you’re pregnant, you should be careful about sharing food, which is a surface on which CMV can survive, washing toys, in addition to the things that we normally think of as just good pregnancy hygiene in terms of washing hands after you change diapers or wipe a face. But those casual, good parenting kind of interactions that include kissing your kid when they’re upset and they have all sorts of bodily fluids on their face.

I’ve been in situations where I personally have been told, “Well, that’s not a risk of contracting it during pregnancy,” where it’s just factually incorrect, just misinformation. It’s because a clinician just hasn’t had an intersection with that part of CMV’s natural history in their training. Rather than say, “I don’t know,” or “Let me look that up,” or even listen to my experience as a caregiver and as someone who is the chair of the scientific advisory committee at the National CMV Foundation and co-founded STOP CMV AZ here in Arizona, what I’m up against there is that notion that physicians find it very difficult to say, “I don’t know.” There is this idea that that engenders distrust, but actually, that makes me trust you more.

So what I can do is bring that story into educational spaces and say, “Here is a reason why not saying ‘I don’t know’ can actually cause harm and can actually cause distrust.” Because if somebody goes to the literature and they say, “Well, this isn’t right,” or they go to other trusted messengers, which especially in these spaces of caregiving, trusted messengers include people who are living the experience or are ahead of you in the journey, why not partner together? This is a great example of collaborative care. That’s how I can use that experience and either put myself into it or just say, “These are things that happen commonly that are reported to me in my professional roles in these advocacy groups.” What can we learn from this in terms of your own professional identity formation as medical students and residents, people working in the fields in which they can affect care for CMV?

Kevin Pho: Now, as you know, medicine hasn’t traditionally been the most receptive when it comes to blending the personal with the professional. There’s always been a clear line of demarcation. So sometimes those identities can’t be separated, as you shared in your story. Have you run into any headwinds or obstacles when expressing yourself as a single identity rather than being these separate, compartmentalized components?

Kathleen Muldoon: The short answer is yes, I have. And I want to be part of the change for that. In my own life, I am very clear. Like, “I am taking PTO right now to take my son to a clinic visit,” versus, “I am being invited to help advise senators on the STOP CMV Act, which would increase funding for CMV screening in states.” In that case, I am in a professional role. Do I know about CMV because I’m a mom? Yes.

I think if we take a broader look back, this has been happening for a long time. Why do people go into research on Alzheimer’s disease or cancer research? It’s hard to say that people aren’t passionate about their research because of some personal connection. I think what we need to do is take a step back and say this idea that I wear a whole bunch of different hats—and I have bought into that myself. “I’m swapping out my different hats now. Now I’m a mom, now I’m a caregiver, now I’m this, whatever.” But it is not really hats that we should be talking about, in my opinion. I think they are lenses, and these are lenses that sharpen each other. The knowledge that I gain about how to speak about hard things when I’m advocating for something personal for my son are the same skills that I take into asking questions when I teach a humanities and medicine class, which is a course entirely about courageous conversation.

I do meet resistance, and I am happy to meet that resistance and have the hard conversation and think about what it would be like if we thought about things a little differently. I want to say one more thing, and that is just when the pandemic hit and we were all relegated to these little boxes, which by definition blended our home and work lives, that’s an opportunity to rethink how we show up and how we handle all these things—all these balls, all this zooming between Zoom meetings and Zoom school and clinic visits and all of the things that we’ve had to do and that your listeners have had to do. That resulted in a skillset. Thinking about moving that forward, what does that mean for a more humane, whole-person-centered medicine is, I think, really important right now.

Kevin Pho: What are some examples of what that resistance looked like?

Kathleen Muldoon: I’ve had examples where I have filled out the end-of-year evaluation forms and received some questions, as in, “Please indicate which of these were personal obligations versus professional.” This was when, clearly, there were places where I was an invited lecturer or keynote speaker, and was a representative of my workplace. On the other side of it, I have been invited as a keynote speaker at infectious disease conferences. I’ve given more than 200 invited lectures internationally as Dr. Muldoon. I’ve published a lot of papers on data that I’ve collected about caregivers’ experiences with CMV, how you go from diagnosis to advocate, and what clinicians know and don’t know about CMV—data measured using my anthropology skillset, ethnography, all of the things.

I’ll be presenting, and then in the question-and-answer period, I have even had a very specific example. I was presenting at this infectious disease conference, and I have three children. My son infected by CMV is my middle child. I was pregnant with my third child and very visibly pregnant at this time when I was giving this presentation. The question that I got from the audience was, “CMV is not really that big a threat. Stress is more dangerous to a pregnancy than this virus.” I pushed back with all of the evidence, and then the question that came back was a hard look at my body up and down. This person was visibly taking in my pregnant belly, and they said, “Well, where did you read that? What to Expect When You’re Expecting?” Just cutting down my expertise. I said, “No, the New England Journal of Medicine, JAMA, PNAS, all of the places that we know.”

Then, another example of how these things go together, I walked out and cried hot tears in my car because that was totally inappropriate and unprofessional, in my opinion. I wasn’t accusing anybody of doing anything wrong because they didn’t know. I was just saying, “Here’s the evidence. We need to be talking about this more.” To experience that as a challenge, but not for them to take that in as, “Maybe I don’t know this. Maybe I need to look into this. Where is that feeling coming from?” Instead of taking that in, they brought this speaker down in this way. So those are just two examples that come to mind.

Kevin Pho: You open up the article by talking about the term “mother-scholar.” At first, you thought maybe it would’ve been a curse, but then after reflection, of course, it’s a statement of who you are. So talk about how important that term “mother-scholar” is to you.

Kathleen Muldoon: I love that term. It’s so weighty. I just love the words that sit hard in your mouth and that come out. I think, again, it’s like pairing those identities as intersectional and as informing each other and owning your wholeness. For me, it is very specific about being a mother. Through that terminology and through some work, I have co-published with other parents, especially parents who are raising children with disabilities and female parents who identify as mothers, and thinking about how those co-identities actually inform our work and have moved us into spaces where we’re more intentional about what questions we’re asking.

It is a very specific term to my situation, but I think the experiences that we often feel like we have to hide as part of our professional life, as you referred to before, that’s actually where we probably learn to be the most human and our most transformative for ourselves moving forward. To me, that’s what it represents. I am a mother. I stand in these two spaces simultaneously, not hopping back and forth between one and the other, but they co-inform who I am in all spaces when I bring my whole self. That is very important, I think, to me and for medicine to reckon with.

Kevin Pho: We are talking to Kathleen Muldoon. She’s a physician coach and medical school professor. Today’s KevinMD article is “How motherhood reshaped my identity as a scientist and teacher.” Kathleen, let’s end with some take-home messages that you want to leave with the KevinMD audience.

Kathleen Muldoon: Well, I think if there’s one thing I hope listeners take away, it’s that caregiving—for me, in particular, but anything that’s a large part of who you are outside of the clinic, outside of the classroom—isn’t a distraction from professionalism, but it’s where a deep well of knowledge and strength can come from. Whether you’re a clinician, an educator, or a caregiver yourself, maybe question the experiences that you often feel like you have to hide. Think about how they inform who you are and why you have the role and the power and the relationship that you have with your students, with your clients, with your patients. So, thank you, Kevin, for the space to share my story and to be in conversation with so many people who I think are living quiet versions of this same issue every day.

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

Kathleen Muldoon: Thank you.