The anticipation of welcoming a new child into the family is a moment filled with excitement and hope. For many expectant parents, each pregnancy is an opportunity to experience the journey of parenthood anew, with fond memories of milestones shared with older siblings. However, along with the joy of pregnancy comes the weight of responsibility—especially concerning the well-being of the unborn child. For some parents, this journey can turn into a race against the clock when faced with unexpected health challenges that can alter their family’s trajectory.
When we learned we were expecting our third child, our hearts soared. Having experienced pregnancy twice before, we hoped we were well-prepared. With all the nutritional guidelines at our disposal—ranging from avoiding alcohol to limiting raw foods—we felt optimistic. These precautions seemed straightforward and achievable. Our son made his debut in March 2023, initially appearing to be as healthy as could be. Yet, as he underwent the routine checks typical of newborns, our joy would soon be overshadowed by confusion and concern regarding his health.
The looming issue became apparent when our son failed his newborn hearing test—a signal that would lead us down a rabbit hole of medical appointments and unanswered questions. Despite reassurances from medical professionals that his hearing difficulties were likely temporary, we felt that something more significant was at play. The months that followed were fraught with persistence as we sought clarity across various audiology clinics, only to be met with the same troubling realization: our son’s hearing loss was neither resolving nor understood fully by the providers we consulted.
Our breakthrough came during a visit to Children’s Hospital of Philadelphia, where an otolaryngologist introduced us to the term congenital cytomegalovirus (cCMV). Until that moment, this formidable virus had escaped our vocabulary as parents. After testing our son’s dried blood for indicators of the virus, we received the unwelcome news that would shift our entire perspective on pregnancy and newborn care.
To our dismay, research revealed that cCMV, while common, has serious implications for infants, being the leading infectious cause of birth defects in the United States. With staggering statistics indicating that one in 200 newborns is affected by cCMV, it became alarmingly clear that many parents are left entirely in the dark about it, often due to inadequate education from healthcare providers.
The diagnosis presented a complex array of emotions ranging from guilt to anger. We had adhered closely to numerous guidelines to safeguard our child’s health, yet we had never been made aware of the potential risk of CMV—a virulent yet preventable condition. Straddling the line between educating ourselves and advocating for our son became a necessity. The stark reality hit: 91% of women and a significant majority of healthcare providers lacked knowledge about CMV, perpetuating the ignorance surrounding it.
In grappling with this harsh truth, we faced practical challenges as we navigated a system unprepared to support our son’s needs. As our son continued to encounter developmental delays, we poured our energy into ensuring he received adequate physical therapy and specialist consultations. Our days became a relentless quest filled with numerous appointments, assessments, and lengthy sessions of tailored exercises designed to help him meet developmental milestones that most children achieve without such hurdles.
What emerged from our experience is the pressing need for robust awareness campaigns geared toward both parents and healthcare professionals. We are passionate advocates for education regarding CMV, emphasizing its preventability through simple precautions—like minimizing contact with saliva and avoiding sharing utensils. Parents must understand the risks involved in order to safeguard their unborn children effectively.
We also call for universal newborn screening protocols to be established within hospitals, ensuring every baby is tested for cCMV around the critical two-week mark. Such proactive measures could dramatically alter the life trajectory of thousands of children with the virus, allowing for interventions that could facilitate healthier development from the start—something that could have offered our son a more promising outlook.
As we continue to support our son in his development, amidst joys mixed with challenges, we hold on to the hope that one day—through education, understanding, and responsive medical care—no parent will have to endure the uncertainty of such a diagnosis. Our journey reflects not just our trials but serves as a beacon for awareness, aimed at ensuring all families can revel in their children’s growth without the looming specter of preventable conditions like cCMV.
Through sharing our story, we advocate for a future where the burden of CMV fades, replaced by empowerment through knowledge and informed choice—a future where all children can thrive without compromise.