Our family’s journey with congenital cytomegalovirus has been somewhat different than many we’ve heard. An abnormality was detected on the ultrasound the day we were set to learn Aedan’s gender. It was at that point we were given a list of diagnoses it could mean, while also told it could be nothing at all, suggested to see a geneticist, and asked to select which testing we wanted based on that information— a whirlwind, to say the least. After educating ourselves on CMV because we had never heard of the virus, we learned that my risk for it was high because I was a preschool teacher. I was tested and it was concluded that I had CMV during my first trimester. Aedan was born healthy, just four days shy of his due date. He failed his hearing screen at the hospital and remains partially deaf, but we were aware that it was a possibility. With such early knowledge, we have been able to give Aedan every single opportunity for success with specialist interventions from the very start. Congenital cytomegalovirus is a crushing, devastating diagnosis for so many families. Perhaps if more emphasis was put on the severity of it, how easily it is contracted, and the simple prevention measures during prenatal care, we could see a dramatic decline in cases. For now, let’s start by giving cCMV babies a fighting chance with universal screening at birth.
Holden James Keenan was born on April 11, 2020, at 3:23 AM at 30 weeks and 4 days gestation. Holden passed away at 5:59 AM the same day. At my anatomy scan the doctor said my baby had fluid in his stomach and requested I get an amniocentesis, which unfortunately came back as positive for CMV. From this point on we had countless appointments: MRIs, blood work, sonograms, a procedure where a 22 gauge needle is placed into my uterus and his stomach to drain the fluid, all in hope his lungs would continue to develop. I also started taking Valganciclovir. I knew the odds were not in his favor when they found it mid pregnancy. My doctor said he had a 5% chance of survival in the womb and didn’t think he would survive delivery. At my 30 week appointment my doctor was shocked that he was still kicking, moving with normal heart beats. 4 days later he was born, then later passed. The doctors did all they could to save him but he was almost 100% reliant on oxygen. I know he is no longer in pain and at peace. I wish I knew about CMV and had testing so this could have been prevented and my son could have been here with me today.
Congenital Cytomegalovirus (cCMV) is both the most common congenital infection in the developed world (Swanson & Schleiss, 2013) and the leading cause of non-genetic hearing loss in children (Zegarac, 2017), yet the virus remains relatively unknown. In 2016, a study published in the Journal of Early Hearing Detection and Intervention revealed that only 9% of women were aware of CMV (Doutré, S., Barrett, T., Greenlee, J., & White, K., 2016), demonstrating a significant decrease from prior studies.
Cytomegalovirus is a common viral infection, much like the everyday cold. In fact, over half of all adults have had a CMV infection by age 40. The virus is easily transmitted and preventable, living in saliva, urine, and other bodily fluids that can be quickly spread through households and early childcare settings without precautions such as frequent handwashing. In healthy adults the virus may cause no symptoms at all or it may cause mild illness, such as a fever or a sore throat. However, when a woman is infected with CMV during pregnancy the virus may be transmitted to the unborn fetus, causing the infection known as congenital cytomegalovirus.
Congenital cytomegalovirus can cause a wide range of health conditions in babies. (National CMV Foundation, 2020; CDC 2020). The degree of complications caused by cCMV ranges from mild to severe, depending on the baby’s presentation at birth. Babies born asymptomatic (without any or with minimal symptoms of the virus) may have no visible delays or health impairments, or they may have hearing loss, mild vision loss, and communication delays. On the other end of the spectrum, babies born with symptomatic cCMV may present with more serious complications such as Cerebral Palsy, seizures, failure to thrive, vision and hearing loss, and in some cases, death (National CMV).
CMV Presents in a spectrum
When we think about viruses and viral infections, our automatic assumption is that the more we hear about it, the more people it impacts. It is likely that every single person reading this article is aware of the seasonal flu and, most recently, the novel coronavirus, but are they aware of how many babies are impacted by cCMV? The Center for Disease Control estimates that approximately 1 in 200 babies are born with congenital cytomegalovirus, and 1 in 10 of those babies will be symptomatic at birth. Of the babies born symptomatic at birth, 1 in 5 will present with long-term health complications. Unfortunately, this is likely an oversimplification that underestimates the number of babies affected by cCMV.
Incidence varies by studies
Based on the statistics provided by the Center for Disease Control (CDC) the prevalence rate of congenital CMV falls around 0.5%. However, this estimate is merely that- an estimate- and actual prevalence varies across the country and between studies. In 2020, physician and CMV expert Dr. Gail Demmler-Harrison reported that the incidence of congenital CMV actually ranges between 0.2%-2.5% in the United States (Demmler-Harrison, Miller, 2020). This discrepancy between studies occurs for a variety of reasons that include, but are not limited to, the population studied, the geographical location, and the study design. In addition, some studies have found differences in the prevalence of cytomegalovirus based on race and ethnicity, with rates of infection being significantly higher among black and multiracial infants and slightly higher among Hispanic white infants (Fowler et al., 2018).
Current estimates only include live births
The 1 in 200 babies born with congenital cytomegalovirus does not include miscarriages or stillbirths. According to Dr. Demmler-Harrison, 8% of newborns with cCMV will die in utero or as a newborn or in early infancy (Zecarac, 2017).
Many babies with congenital cytomegalovirus are missed due to being born asymptomatic or with mild symptoms.
Approximately 90% of babies born with cCMV will have no symptoms, while 10-15% of those babies will later develop a progressive hearing loss (Fowler, 2013). To receive a cCMV diagnosis, babies must be screened within the first three weeks of life. Without this universal screening at birth, most babies born with little to no symptoms may never be diagnosed, creating a barrier between babies and the medical and educational services they may need now and in the future.
Due to a lack of newborn screening for cCMV, the virus’s prevalence and impact are likely much higher than the current estimates reflect. The need for increased awareness and universal newborn screening of congenital cytomegalovirus at birth is critical. With proper public awareness of the virus and its transmission, pregnant and expectant mothers will have the knowledge and resources to prevent congenital cytomegalovirus. Additionally, the proper identification of both asymptomatic and symptomatic infants infected with cCMV at birth will allow parents the opportunity to access appropriate treatment, therapies and educational services, and resources as soon as possible, thus leading to better outcomes for the child.
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Demmler-Harrison, G. J., Miller, J. A., & Houston Congenital Cytomegalovirus Longitudinal Study Group (2020). Maternal cytomegalovirus immune status and hearing loss outcomes in congenital cytomegalovirus-infected offspring. PloS one, 15(10), e0240172. https://doi.org/10.1371/journal.pone.0240172
Fowler K. B. (2013). Congenital cytomegalovirus infection: audiologic outcome. Clinical infectious diseases : an official publication of the Infectious Diseases Society of America, 57 Suppl 4(Suppl 4), S182–S184. https://doi.org/10.1093/cid/cit609
Fowler, K. B., Ross, S. A., Shimamura, M., Ahmed, A., Palmer, A. L., Michaels, M. G., Bernstein, D. I., Sánchez, P. J., Feja, K. N., Stewart, A., & Boppana, S. (2018). Racial and Ethnic Differences in the Prevalence of Congenital Cytomegalovirus Infection. The Journal of pediatrics, 200, 196–201.e1. https://doi.org/10.1016/j.jpeds.2018.04.043
Swanson, E. C., & Schleiss, M. R. (2013). Congenital cytomegalovirus infection: new prospects for prevention and therapy. Pediatric clinics of North America, 60(2), 335–349. https://doi.org/10.1016/j.pcl.2012.12.008
Congenital Cytomegalovirus (cCMV) is the most common non-genetic cause of birth defects and the leading cause of sensorineural hearing loss. Shockingly, 91% of women have never heard of cCMV, despite its prevalence (Doutre et. al, 2016).
There is a substantial amount of evidence that pregnant women can reduce their risk of transmission through simple behavioral changes. These behavioral changes include hygiene precautions such as kissing a child on the forehead instead of the lips, not sharing utensils, food, or drink with young children, and handwashing after diapering. Despite this, the American College of Gynecology and Obstetrics (ACOG) describes hygiene recommendations as “impractical or burdensome” and says that “patient education remains an unproven method to reduce the incidence of CMV infection” (Demmler-Harrison, 2016).
“Let the Woman and her Family Decide”
Based on well-documented evidence and over 30 years of experience, infectious disease doctor and CMV expert Dr. Gail Demmler-Harrison respectfully disagrees. In a recent interview she did for a podcast (The Hou to Guide) Dr. Demmler-Harrison was quoted saying, “I think it’s a rather paternalistic view. I say, let the woman and her family decide for themselves. Give them the available information, and let them be CMV-aware. She was also quoted saying “they (ACOG) don’t want to unduly alarm pregnant women about the potential risk. But I can tell you, that when I see families[…] and they’re holding their little baby, that’s four weeks old, and they say, ‘Why did those of you who came before me not warn me? I wish I had known about CMV, and have the choice to make that decision,’ it’s heart-breaking. It brings me to tears. And all I can say is, “I don’t know. I’ve been trying for over thirty years to educate pregnant women about CMV.” (The Hou to Guide: Interview with Dr. Gail Demmler-Harrison).
An article published in October 2020 in the Pediatric Infectious Disease Journal analyzed all published studies on the effectiveness of “preventative hygiene-based interventions in pregnancy” to reduce the incidence of CMV infection (Barber et. al., 2020). Here are some of the key findings from this study:
Preventative measures are accepted by pregnant women and there was no increase in psychological distress.
Preventative measures can impact pregnant women’s behavior and reduce CMV in pregnancy.
An effective intervention is needed as part of routine prenatal care to change behavior and reduce the risk of CMV infection during pregnancy.
An Italian study found a stark difference in the incidence of CMV infection in women who had received prenatal education and those who did not (Revello, 2015). Women in the intervention group received hygiene counseling at 12 weeks gestation which included verbal, written, and visual information. Findings showed that 7.5% of women who did not receive hygiene counseling acquired a primary CMV infection, in comparison to only 1.2% of women who did receive counseling. 93% of participants in the study felt that the recommendations were worth advising to all at-risk women.
A French study that was conducted on a larger scale, had similar findings (Valloup-Fellous, 2009). This study compared the incidence of maternal CMV infection before 12 weeks gestation with no hygiene counseling versus after 12 weeks of gestation with hygiene counseling. Findings showed that 0.42% of women who did not receive prenatal counseling acquired a primary CMV infection during pregnancy, as opposed to only 0.19% of women who received counseling on prevention.
Finally, two small studies performed in the United States found that, with hygiene counseling, pregnant women were significantly less likely to acquire a primary CMV infection than were women who were trying to conceive. (Adler et al., 1996, 2004)
Currently, nine states require the education of both the public and medical professionals about CMV. They are Colorado, Hawaii, Idaho, Illinois, Iowa, New York, Oregon, Texas, and Utah. Tennessee also requires the education of women of childbearing age (National CMV Foundation, 2020).
It is time that Massachusetts joins the ranks of the states requiring prenatal education about CMV. 1 in 200 children are born with cCMV (CDC), which means hundreds of Massachusetts babies are born every year with the virus. Unfortunately, my son was one of them in 2017, and he lost his life after 4 months in the NICU. Every time I share my story, women simply cannot believe that they have never heard of a virus so common. Women deserve to know that CMV exists and to be able to make the decision to follow hygiene precautions if they so choose.
Imagine this: You are pregnant and your seemingly healthy toddler leans in for a sloppy, open-mouthed kiss on the lips…what would you do? You find this quite adorable and harmless, so you kiss them back! But what if you knew that in that adorable child’s saliva potentially lived a virus that could harm your unborn baby?
Quick facts about the herpesvirus family: Once you have had them, they live in your body for life and periods of “reactivation” are standard (Colugnati, 2007). They are most often transmitted through direct contact with bodily fluids (Kaye, 2019).
Which pregnant women are at the greatest risk of contracting CMV?:
Pregnant women with young children in the home.
In developed countries like the United States, CMV is usually transmitted after “frequent and prolonged contact with children (less than three years of age)”(Manicklal, 2013).
Young children who acquire CMV infection may shed the virus into their bodily fluids for a year or more (Cannon et al., 2011).
Pregnant with young children who attend daycare.
Those with children in daycare are at a higher risk of contracting CMV; the percentage of children ages 1 to 3 years old with the virus in their urine and saliva ranges between 30-40% in childcare centers, but can be as high as 70% (American Academy of Pediatrics, 2015).
Pregnant women who work in early childcare.
8% – 20% of childcare staff are infected with CMV each year (Adler, 2015).
What are activities that can increase the risk of congenital CMV?
Kissing a child on the lips.
Sharing food, drinks, & utensils.
Putting a child’s pacifier in your mouth.
Handling toys that may have been in children’s mouths.
Wiping a child’s nose or mouth.
Changing a diaper.
Not washing your hands before putting hands to your mouth (i.e., for eating, smoking, nail-biting) (Brown, 2019).
Having unprotected sex, especially with a new partner (Cannon et al., 2011).
How Long Can CMV Live On Surfaces?
If I have already had CMV, is my unborn child immune to congenital CMV?
The short answer? No, but it is less likely. Here are the odds that a pregnant mother with an active CMV infection will pass it along to her baby, according to the CDC:
Primary infection (first time):
30 to 40% in the first and second trimesters
40 to 70% in the third trimester
Non-primary infection (not the first time):
These are women whose strain of CMV has been reactivated or in women who are reinfected with a different CMV strain.
Source: (CDC, 2020)
Should I follow these guidelines if my child does not appear sick?
YES. The majority of healthy individuals who get CMV do NOT display ANY symptoms, including children who acquire CMV outside of the womb and pregnant women.Possible mild symptoms include fever, sore throat, fatigue, and swollen glands. Occasionally, CMV can cause mononucleosis(“mono”), which is usually caused by a different strain of herpesviruses, Epstein-Barr (CDC, 2020).
I wish I knew
When I was pregnant with my second son, I already had a one-year-old named Sam. I had no idea that kissing him on the lips or sharing a drink or fork with him could put my unborn child at risk. I believe I was a good hand-washer, but had I known his saliva and urine potentially carried a dangerous virus, I would have been more thorough and consistent about handwashing. My second child, Logan, was born via c-section at 27 weeks, weighing only 1.2 pounds and very sick with congenital CMV. The only reason he was even born alive was that I had a minor fall that brought me into the doctor for monitoring. The fall did not hurt him, but it was clear that something was very wrong. I couldn’t believe it when I learned he had cytomegalovirus. I do not remember being sick. I do not remember Sam being sick. Logan never left the hospital, passing away at four months old.
I chose to follow these prevention guidelines while pregnant with my third son, Julian. I thought not kissing Sam on the lips would be difficult, but it wasn’t. Sam adjusted quickly to being kissed on the forehead, and he felt no less loved or nurtured. It was not hard to make sure he had his own fork, spoon, and drinking glass. I was more vigilant about washing my hands. Julian was born full-term and healthy, for which I am so thankful. It is impossible to say whether or not Logan would also be here, happy and healthy, had I known these simple recommendations. Unfortunately, I will never know.