When we found out we were expecting our third child, we were overjoyed. No pregnancy is easy, of course, and we already had our hands full with two little ones. But this was our third time around, and we were confident we knew what to expect.
There is no shortage of nutrition guidance for expecting mothers: avoid alcohol, limit caffeine intake, don’t eat potentially harmful foods like sushi and raw cheese—the list goes on. We followed that advice to a tee and did our best to avoid anything that could harm our unborn child, as any expecting mother is typically more than happy to do.
Our son was born in March 2023 and seemed to be a healthy baby after a relatively easy pregnancy. Soon, however, there were warning signs that something wasn’t right, starting with him failing his newborn hearing test before discharge from the hospital. The physicians at the hospital advised that this failed hearing test was likely due to a buildup of amniotic fluid in his ears that would resolve on its own, never once mentioning congenital cytomegalovirus (cCMV). Over the next two months we followed up with three different audiology clinics who repeated the newborn hearing screening, but our son’s hearing loss was not resolving, and we were still searching for answers.
When our son was 3 months old, we were able to get an appointment with Children’s Hospital of Philadelphia (CHOP), where the otolaryngologist (also known as an ENT) asked us if our son had been tested for cCMV—an illness we had never heard of, but one that would soon consume almost every waking hour of our lives. Because our son was well beyond the four-week window to test him directly for cCMV, the ENT had to obtain his dried blood spot (DBS) from birth to determine the diagnosis. Thankfully, our hospital still had the DBS. When our son tested positive, we did our homework quickly, and what we discovered was deeply alarming.
CMV is a common virus that infects people of all ages, with 1 in 3 children infected by the age of 5, and half of adults infected by the age of 40. Most people with CMV carry the virus unknowingly with no signs or symptoms. However, 1 in 3 pregnant women who become infected with CMV will pass the virus to their unborn child, which can lead to devastating, life-long impairments.
cCMV is the single leading infectious cause of birth defects in the U.S. The Centers for Disease Control (CDC) estimates that 1 in 200 babies are born with cCMV, 1 in 5 of which will have long-term health problems, including hearing and vision loss, epilepsy and other physical and cognitive challenges.
Given CMV’s high prevalence and devastating effects, it was almost impossible to comprehend how we could be blindsided by the diagnosis. After all of the pregnancy books we read and experts we consulted through each of our three pregnancies and since our son’s birth, how could we have never encountered the term CMV? Why hadn’t any of our medical providers warned us about it? Was there a way we could have prevented this?
It turns out we weren’t alone: 91% of women do not know about CMV.
Parents are not the only ones left in the dark—even more concerning is the lack of education around CMV among healthcare providers.
According to one survey, 91% of healthcare providers say they would like more training on CMV to better discuss it with their patients. While we were fortunate to receive the diagnosis and care we needed at CHOP, many of our local OB-GYNs didn’t know much about the condition, and our pediatrician had never treated a child with CMV. My heart breaks for the many CMV parents, especially in rural areas, endlessly searching for answers while their child struggles.
This level of misinformation not only delays an initial diagnosis and the development of an effective care plan, but also leads to discrimination.
Without adequate knowledge of how CMV is transmitted, we have had healthcare professionals and therapists refuse to treat our son over concerns of infection.
We fear that the stigma of the condition, based entirely on false assumptions, could impact our ability to get him the care he needs. This, on top of scarce resources and support systems for those living with CMV, can make any parent feel isolated.
Our son’s battle with CMV over the past year goes beyond hearing loss. As he’s grown, we’ve seen clear developmental delays of fine and gross motor skills. He has had to work extremely hard to achieve the milestones that other 14-month-olds accomplish easily and is often many months behind his peers in physical development. We have upended every aspect of our life to give our son the additional attention and support that he needs to help him achieve the best possible outcomes. In this past year alone, we have had more than 50 physical therapy sessions, and more than 50 visits with specialists and pediatricians.
This number will likely increase over the next year as we add in new therapies and specialists for his continued progression and care. As parents, we also work with our son every chance possible to reinforce these therapy sessions and treatments. There is no “off” time. Our son’s delays and challenges serve as a daily reminder of his diagnosis. With the utmost gratitude, he consistently shows improvement and is making strides every day, yet we are still left to constantly wonder—will he catch up to the other kids around him? Is there a ceiling to the progress he can make? Is this the ceiling?
Now, we want to educate other families—CMV is common and serious, but most importantly, it is preventable. There are simple and effective ways to avoid contracting CMV during pregnancy. Given the virus is commonly transferred through contact with saliva, avoiding things like sharing food and utensils with young children, not putting a pacifier in your mouth or kissing a child under 6 years of age on the lips during pregnancy can help reduce a woman’s risk.
Beyond prevention, there is an urgent need for improved education and training for healthcare providers to identify and treat CMV early. Given its prevalence, there should be a clear, universal screening protocol for all newborns within 2 to 3 weeks of birth to confirm if a baby has congenital CMV. Implementing simple testing as the standard of care could change thousands of lives. Had this been the case for our son, he may have been in a better place with his development today.
For parents, there is nothing like the joy of experiencing your child’s many milestones in their early months and years, from watching them sit up on their own for the first time, crawl, say their first words and take their first steps. Children born with cCMV, like ours, may achieve these moments, but it almost certainly requires extra dedicated efforts and attention to do so. Regardless of their abilities or what end of the wide spectrum they fall, these children are valued, whole, and fully loved. They deserve more than what the current medical landscape is providing them. We tell our story in hopes that one day, no child has to suffer from CMV, and every parent has the chance to witness those magical moments without compromise.
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