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.