by Megan Becker
My son Aidan was born in 2022 with congenital cytomegalovirus (CMV). Aidan failed his newborn hearing screening test twice in the hospital. After the failed screenings, a nurse asked me if I had CMV. I said I had never heard of it. I didn’t know what CMV was or what the letters stood for. Her response? “You would know if you had it.”
She then informed me that they would be testing Aidan for CMV before he could be discharged. The medical team at the hospital did not provide me with any additional information or guidance about CMV. As a result, I left the hospital unclear about the CMV test and with the common misconception that my newborn just had fluid in his ears, and that he would be fine.
Learning More About Congenital Cytomegalovirus (cCMV)
When Aidan failed his follow-up hearing exam two weeks later, I was handed an informational pamphlet about CMV and told to follow up with our pediatrician for further hearing test options.
Once again, I received very little to no information about CMV and what the next steps to help my son should be, nor did anyone make it clear that I needed to act quickly or have a reason to be concerned. A few hours later, I was shocked to learn that Aidan was positive for CMV. Once the Department of Health notified our pediatrician, additional tests were ordered to confirm the diagnosis, but our pediatrician shared that he did not know much about CMV and left me with the impression that it was not a big deal.
A few days after the final tests were confirmed, I began receiving phone calls imploring me to have Aidan seen immediately by an infectious disease physician. You can only imagine how scary this had to have been for me as a parent, who had received very little to no information about CMV, to be inundated by phone calls and urgent requests to set up an appointment. Especially, since no one demonstrated any urgency or gave true care to me when Aidan first failed his newborn hearing screening test weeks prior.
Subsequently, at five weeks of age, Aidan was diagnosed with unilateral moderate to severe sensorineural hearing loss.
Aidan was seen by fourteen medical providers within his first month of life. Only one doctor could provide us with accurate information, communicate the severity of his CMV diagnosis, and provide the next steps to optimize Aidan’s health. I have had to fight hard for my son to be properly cared for over the past eighteen months and have made every effort to educate myself to the furthest extent possible about CMV and its effects. As a result, I tend to be more educated about CMV than most of the care team specialists he has seen since he was born, and I have had to push Aidan’s care team for additional testing, research efforts, and to make sure that Aidan is not brushed aside.
What CMV Can Look Like in Babies
It is important to know that babies born with congenital CMV (cCMV) can have widely diverse outcomes, and it is difficult to predict with any degree of certainty their future health or developmental prognosis. Babies born with congenital CMV may be born with birth defects and developmental disabilities, including:
- Hearing loss
- Vision loss
- Mental disability
- Microcephaly (small head or brain)
- Intracranial calcifications
- Lack of coordination
- Cerebral Palsy
- Feeding issues /failure to thrive
- Sleeping, behavior, sensory issues
- Seizures
The best way to tackle the devastation cCMV causes is by preventing it from happening in the first place. You’re more likely to pass CMV to your baby if you get infected during pregnancy than if you had an infection before you got pregnant. If you have a CMV infection during pregnancy, you have a one in three chance (33 percent) of passing it to your baby.
In the past few years, we have seen how crucial vaccine development can be. However, we have also seen that vaccines require funding, demand, and public awareness. All of these things are hard to come by when few people have heard of CMV, and even fewer understand its impact.
Most Parents Have Never Heard of CMV
There is a lack of knowledge about CMV among women, families, and healthcare providers. Congenital CMV is a complex, critical public health issue. There are, however, things that can be done to ensure that the impact of cCMV is reduced. If considerable strides in education awareness occur, we can potentially eliminate pregnancy loss, childhood death, and disability due to congenital CMV.
You may be able to reduce your risk of getting CMV by reducing contact with saliva and urine from babies and young children. The saliva and urine of children with CMV have high amounts of the virus. You can avoid getting a child’s saliva in your mouth by, for example, not sharing food, utensils, or cups with a child. Also, you should wash your hands after changing diapers. These cannot eliminate your risk of getting CMV but may lessen the chances of getting it. I wish someone had told me to be more careful. I wish I had known to not share silverware or eat after my toddler. I wish someone had told me to just kiss her on the forehead goodnight and not her cheeks. It would have been hard, but I can do anything for only nine months. I made a choice not eat sushi and deli meat or change kitty litter for nine months. I could have made other choices to protect myself, but I did not know to do so. Education and awareness would have changed my habits.
Four hundred infants die each year because of congenital CMV, and it is likely a significant cause of miscarriage and stillbirth. I have learned that CMV is a much greater risk to babies than many things our healthcare providers had told us about. More children are disabled due to CMV than many other well-known disorders, including Down syndrome, spina bifida, Zika virus, and toxoplasmosis. Why aren’t medical professionals urging families to be more cautious about contracting CMV during pregnancy? I urge friends and families to talk about CMV with anyone they know who is pregnant or may be considering becoming pregnant in the future. Education and awareness are one of the main ways to help future babies to hopefully not be impacted by this horrible virus.
Protecting Babies from CMV
Women can be tested for CMV prior to pregnancy. Ask the doctor to run CMV IgM and IgG antibody tests. If a woman has been exposed to a recent CMV infection, it is recommended that she wait until her CMV IgM antibody levels decline to an undetectable level, and her CMV IgG avidity index climbs to a highly favorable percentage, before trying to conceive. This can take anywhere from six to twelve months. It is important to wait until the CMV infection has resolved because it minimizes the risk of CMV transmission from the pregnant woman to her baby in utero. If you are already pregnant, you can request that CMV IgM and IgG antibody lab tests be added to your routine labs. These tests are relatively inexpensive and are covered by most insurance plans.
CMV continues to be a critical problem, and a vaccine is needed now. Motivated by our individual cCMV journey, I advocate for the National CMV Foundation, urging widespread awareness, prevention, and testing for cCMV. Aidan’s story is unfortunately a true depiction of how broken our healthcare system is for children born with cCMV. Because CMV is so preventable it is disappointing that there is not greater awareness and educational efforts to inform all expecting mothers and families about the risks related to this virus. I hope that one day a vaccine will be developed, accessible, and supported by medical professionals to prevent this disease from impacting future newborns.
My resilient rockstar, Aidan, with his happy-go-lucky snaggle-toothed grin, is now nearing two years old and beginning to thrive. Despite his gross motor delay and hearing loss, Aidan is a fierce fighter. After a month-long hospitalization at two months old, weekly specialist visits, and bi-weekly early intervention services, Aidan is still learning to walk and speak. Aidan loves bath time, reading books with his big sister, and swinging on the playground.
Megan Becker contributed this article to RFM. She works at Virginia Commonwealth University and lives in Chesterfield with her family.
