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Congenital CMV: The Importance of Prevention, Early Screening and Treatment

 

Congenital cytomegalovirus (cCMV) is the most common infectious cause of congenital disabilities in the United States, affecting about 1 in 200 infants born each year. Despite its prevalence, cCMV remains underdiagnosed and under-recognized, which poses challenges for early intervention, clinical treatment and management.  

Early identification, appropriate monitoring and targeted support can significantly improve outcomes for affected children.  

The experts leading the charge 

Kathleen Muldoon, PhD, Professor of Anatomy at Midwestern University and co-founder of Stop CMV AZ, knows firsthand the impact of cCMV—not just as a professional but also as a parent. Her son has multiple disabilities due to cCMV.  

“For too long, congenital CMV has been an overlooked condition,” Dr. Muldoon explains. “Most people don’t realize how common CMV is or the long-term consequences it can have. I want to ensure other families don’t go through what we went through.” 

There is often a lack of prenatal counseling about how to reduce the risk of contracting CMV during pregnancy. Many families also face limited support or guidance after a diagnosis, making the journey even more challenging. 

Nathan Page, MD, a pediatric otolaryngologist at Phoenix Children’s and a co-founder of Stop CMV AZ, shares a similar drive to educate providers. His clinical experience treating children with hearing loss caused by cCMV has reinforced his belief in the power of early diagnosis and intervention. 

“I see children who are affected by cCMV very frequently,” Dr. Page said. “Many struggle with hearing loss, developmental delays and other challenges that could have been mitigated with earlier detection.” 

Together, Drs. Muldoon and Page aim to bridge the knowledge gap and empower providers to take action. Their mission is simple but critical: to help health care professionals understand the importance of preventing, diagnosing and treating cCMV. 

What is cCMV? 

CMV is a common virus that belongs to the herpesvirus family. In most people, CMV causes no symptoms or mild illness. However, when it’s transmitted from a pregnant person to a fetus in utero, it can cause a range of problems, from mild developmental delays to severe neurological deficits. Children infected with cCMV can experience hearing loss, vision impairment, cognitive delays and motor difficulties. 

Most infants born infected with cCMV go undetected at birth, but long-term outcomes of the infection often appear later—such as hearing loss and developmental delays,” Dr. Muldoon said. “It’s a silent disability that often goes undetected for months or even years.”  

About 10% of infants will have symptoms at birth, including jaundice, microcephaly, seizures, petechiae/purpura and retinitis. Among these infants, half will face long-term health challenges.  

Raising awareness and educating pregnant patients 

The first step in addressing cCMV is ensuring patients understand the risks and how to reduce them. CMV spreads through bodily fluids, such as saliva, urine and breast milk, making close contact with young children a common source of infection for pregnant individuals. 

Integrating these conversations into prenatal and pediatric visits can have a lasting impact on reducing congenital CMV cases. Framing advice in a positive way—focusing on what patients can do—has been shown to improve adherence to prevention strategies. As providers, your guidance can empower families to adopt simple yet effective behaviors, creating a ripple effect that benefits entire communities. 

The following are some practical prevention strategies to help pregnant patients—especially those with young children at home or who work with children: 

  1. Avoiding contact with saliva: Encourage patients to give young children their own plates, straws and utensils. 
  2. Proper hand hygiene: Remind patients to wash their hands thoroughly after changing diapers, wiping noses or handling toys. This is especially important for pregnant people or those at higher risk of contracting CMV, like daycare workers.  
  3. Cleaning frequently touched surfaces: Advise regular cleaning of toys, countertops and other surfaces that may harbor bodily fluids. CMV can live on surfaces for a few hours or days and potentially be transferred between people. 

“Simple behavioral changes can significantly reduce the risk of CMV transmission as well as many other viruses, including the flu, which can be dangerous for a pregnant person and their baby,” Dr. Muldoon said. “Providers have a unique opportunity to educate families about cCMV prevention. A few simple conversations can go a long way in reducing the risk of transmission.” 

Why screening matters 

The key to reducing the impact of cCMV lies in early detection. Screening allows health care providers to identify affected children before symptoms appear, enabling early intervention and monitoring for complications like hearing loss. 

Currently, newborn screening for cCMV is not routine. In Arizona, providers are addressing this gap through pilot studies demonstrating the feasibility of integrating cCMV screening into newborn hearing tests.  

“The sooner we detect cCMV, the sooner we can begin treatments and therapies to mitigate its effects,” Dr. Page said. “Early detection makes a huge difference.” 

For providers, offering testing when cCMV is suspected is a critical first step. Saliva and urine tests are simple, affordable and effective diagnostic tools that can be discussed with parents to emphasize the importance of early intervention. Equally important is ensuring that health care teams—including audiologists, pediatricians and specialists—understand the strong link between cCMV and hearing loss. 

 “Pediatricians are at the center of the medical home for children with cCMV,” Dr. Muldoon said. “Understanding how to access and coordinate specialty care is essential.” 

Supporting families through the journey 

A cCMV diagnosis can be overwhelming for families. Providers are uniquely positioned to guide them through early intervention programs and connect them with parent-to-parent support networks. 

“Families need to see others who are a little ahead in the journey,” Dr. Muldoon said. “It’s not just about the medical aspects—it’s about the emotional and practical support, too.” 

Dr. Muldoon highlights the importance of a holistic approach when it comes to supporting patient families: 

  • Regular monitoring: Hearing loss can be progressive or fluctuating. Schedule frequent audiological evaluations, even if initial tests are normal. 
  • Access to therapies: Motor delays and learning disabilities may require physical, occupational and speech therapy. Arizona's early intervention systems, for example, are robust and can significantly improve outcomes. 

Building systems for the future 

Phoenix Children’s is leading the charge in cCMV education and care. Dr. Page and his team are working with partners like Valleywise Health and Mercy Gilbert Medical Center to integrate cCMV screening into routine care. 

“We’re not just treating patients,” Dr. Page said. “We’re developing systems that can be replicated statewide to ensure no child falls through the cracks.” 

These efforts aim to create sustainable systems that ensure early detection, intervention and treatment for children with cCMV across Arizona and, hopefully, someday nationwide. 

Bottom line 

Congenital CMV is a public health issue that requires provider awareness, early diagnosis and multidisciplinary care. By staying informed and proactive, you can play a pivotal role in improving outcomes for affected children. 

“Ask your patients about CMV risk factors. Advocate for testing when needed. And remember, the more we know, the better we can support families,” Dr. Page said. 

For additional resources, visit Stop CMV AZ.