My son was born with a congenital cytomegalovirus (cCMV) infection.

Unless you specialize in prenatal care, infectious disease, or pediatric audiology, you’ve probably never heard of it.

That’s the first part of the problem.

And, even if you have heard of it, unless you’re a public health advocate or a parent (or both, like me), you probably don’t know enough about it—at least, not in the ways that matter most to patients.

That’s the second part of the problem.

cCMV is the most common viral cause of disability in the United States. One in 200 infants—about 40,000 babies each year—is born with it. That makes cCMV more common than Down syndrome, spina bifida, or fetal alcohol syndrome. And still, cCMV remains largely invisible in medical training, public conversation, and health care policy.

That’s not just an information gap—it’s a messaging failure.

I’m asking my colleagues in medicine to help fix this problem.

What most clinicians miss

If you remember cCMV from training, it was probably a passing reference in a lecture on TORCH infections or a line in an embryology textbook. Rarely do we offer practical guidance on prevention, counseling, or clinical follow-up. The result is that OB/GYNs and primary care providers often don’t discuss cCMV risks with people who are pregnant or trying to conceive. Pediatricians may not consider or test for cCMV—even when early clinical signs are present. And many parents, myself included, go through pregnancy without ever hearing the term.

There’s no CMV vaccine—yet. Universal newborn screening is rare. That leaves prevention as our first, and often only, line of defense. But how do we prevent something we aren’t even talking about?

Toddlers are the primary vectors.

Here’s what we do know: Toddlers are the primary vectors for CMV transmission in household settings.

Up to 70 percent of all children aged one to three shed the virus in their saliva or urine—often without symptoms—for months. The virus spreads through the close contact of everyday encounters: kissing, sharing food or utensils, diaper changes, wiping noses, handling toys that have been mouthed on or played with by grubby hands. Those aren’t malicious behaviors—it’s the nature of parenting young children.

The highest-risk scenario? A pregnant person or someone trying to conceive who also has a toddler in daycare. In most clinical opportunities, the risk isn’t mentioned. Doctors counsel on folic acid, alcohol, tobacco, listeria, and toxoplasmosis—but cCMV prevention often goes unspoken.

Prevention strategies include what we might call “good parenting hygiene”:

• Wash your hands often, especially after diaper changes and handling children’s toys.
• Avoid sharing food, drinks, utensils, and straws.
• Don’t kiss your child on the mouth or face while you’re pregnant.

Without context, those precautions can sound excessive, overly cautious, and unrealistic—or worse, like judgment. But they aren’t. They’re basic behavioral practices that can dramatically reduce transmission of a virus that can attack a developing baby’s brain.

It may feel emotionally counterintuitive, asking a pregnant parent not to kiss their toddler on the face without sounding like you’re telling them to stop being affectionate. But this is about safety. It’s about making love-informed choices. And without awareness of cCMV, those choices aren’t even on the table.

A missed opportunity in medicine

As a health care community, we’ve successfully educated patients on how to reduce risk for far less common conditions. Why haven’t we done the same for cCMV?

One reason may be that the burden of cCMV prevention falls disproportionately on women—especially mothers. Like too many issues in reproductive and pediatric health, it’s been underfunded, under-researched, and under-discussed.

This isn’t just about social justice. It’s about clinical outcomes.

Congenital CMV can cause deafness (including late onset and progressive hearing loss), vision impairment, seizures, intellectual disabilities, and motor delays. Antiviral treatment—when started early—can improve hearing and neurodevelopmental outcomes. Many children aren’t diagnosed in time, because they either pass the newborn hearing screen and/or no one thought to test them for CMV if they didn’t.

That’s a missed opportunity we can no longer afford.

What you can do now

We don’t need to wait for a vaccine to act. There are tangible, immediate steps clinicians can take:

• Counsel patients during preconception and prenatal care about cCMV. Frame it as part of a broader infection prevention conversation.
• Train pediatric and family medicine providers to consider cCMV in infants who present with growth restriction or low birth weight, microcephaly, sensorineural hearing loss, or neurodevelopmental delays—even if those symptoms emerge months after birth.
• Advocate for universal CMV newborn screening. If we can screen for metabolic conditions that affect 1 in 10,000 babies, we can screen for one that affects 1 in 200.
• Integrate CMV into health professions education. From medical school to nursing and allied health programs, CMV should be part of the core curriculum.

CMV isn’t rare. We’ve just treated it like it is.

A preventable story

As a parent, I carry the weight of what I didn’t know. Not once, during my pregnancy, was I told how to reduce the risk of cCMV. No one explained how common it was, how it spreads, or how simple precautions might have helped protect my son.

And I’m not alone.

I write as a mother, but as one voice among many. Families across the country are living with outcomes that might have been prevented—families who would be living a different reality if someone had simply said something.

I write as a public health advocate, I carry the urgency of making sure others do know.

As clinicians, you carry an extraordinary influence. You shape choices. You shape outcomes. In the case of cCMV, even one conversation could make all the difference.

My son is many things—funny, smart, determined, joyful. He also has a disability that was preventable.

We didn’t know.

Because no one told us.

Let’s change that—for the next family.

June is CMV Awareness Month. Let’s raise the volume. Let’s shift the narrative. Let’s make sure fewer parents ever have to say, “We just didn’t know.”

It’s time to stop treating congenital CMV like a medical footnote.

It’s time to give it the awareness—and the advocacy—it deserves.

Kathleen Muldoon is a certified coach dedicated to empowering authenticity and humanity in health care. She is a professor in the College of Graduate Studies at Midwestern University – Glendale, where she pioneered innovative courses such as humanity in medicine, medical improv, and narrative medicine. An award-winning educator, Dr. Muldoon was named the 2023 National Educator of the Year by the Student Osteopathic Medical Association. Her personal experiences with disability sparked a deep interest in communication science and public health. She has delivered over 200 seminars and workshops globally and serves on academic and state committees advocating for patient- and professional-centered care. Dr. Muldoon is co-founder of Stop CMV AZ/Alto CMV AZ, fostering partnerships among health care providers, caregivers, and vulnerable communities. Her expertise has been featured on NPR, USA Today, and multiple podcasts. She shares insights and resources through Linktree, Instagram, Facebook, and LinkedIn, and her academic work includes a featured publication in The Anatomical Record.