CMV Awareness Month: One Family’s Journey with Congenital Cytomegalovirus
June marks National CMV Awareness Month, which shines a light on the often-devastating impacts of cytomegalovirus (CMV) on newborns. CMV is a common viral infection found in people of all ages.¹ In the U.S., nearly one in three children is already infected with CMV by age 5, and over half of adults have been infected with CMV by age 40.² Saliva and urine from young children are common sources of CMV infections, and people who spend significant time around young children — like parents — are more likely to be infected.³ Most healthy people infected with CMV experience few or no symptoms, and most people are unaware of the disease — 91% of women do not know about CMV or the steps they can take to prevent it.⁴ However, women who develop an active CMV infection while pregnant can unknowingly pass the illness to their newborn, resulting in a potentially serious and life-altering disease: congenital CMV.⁵
Approximately 1 in 200 babies are born with congenital CMV, among which, one in five will face long-term, significant disabilities and health problems such as vision impairment, hearing loss, or decreased muscle strength and coordination.⁶ CMV can be fatal, with approximately 400 infants deaths each year in the U.S.⁷ There are currently only four approved treatments for congenital CMV — intravenous antivirals — but they must be administered within the first four weeks of a newborn’s life.⁸
One Family’s Story
Michelle and Joe Longo know all too well the importance of that four-week window. Michelle and Joe's third child was not tested for CMV at birth and was discharged as normal, despite exhibiting warning signs of the disease, including failing a newborn hearing screening. After persistent hearing problems and developmental delays, and seeking the opinion of multiple healthcare professionals, their son was diagnosed with congenital CMV at four months old — too late to receive the only available treatment.⁹
Michelle and Joe wish they had been warned about the risk of CMV. "If the pediatrician or the OB would have said, hey, be careful of this. We might be in a different situation." As a couple who takes pride in their adherence to the many health and safety guidelines for pregnancy, they were confounded how they could be blindsided by the diagnosis, especially given the virus’s prevalence and devastating impact. But, they soon learned they were not alone – 91% of women do not know about CMV.
The family has had to navigate a medical landscape that is often under-educated and misinformed, and lacks resources and support for those impacted by congenital CMV. Friends and family are unfamiliar with the disease, and even the healthcare providers and specialists treating their son are often new to working with congenital CMV patients, or had never heard of the condition previously. The unknowns are particularly frightening for parents like the Longos. With a lack of research on long-term outcomes and minimal studies that discuss treatment options for children born with CMV, Joe wonders, "where does this go, and does it end? What steps do we need to take to ensure he succeeds?" With the utmost confidence in their son, Michelle and Joe are hopeful for progress. Michelle states, "the first step is awareness that CMV exists, and the next is to take action for necessary, and long overdue, change."
What We Can Do
Increasing education and awareness of CMV is a critical first step – all expecting parents and women of child-bearing age should understand that CMV is common, serious, but most importantly, preventable. If families are more aware of this disease, they can implement tried and true tactics to avoid the spread of CMV. These include simple things like increasing the frequency of hand washing, not sharing utensils with children, and limiting contact with saliva, such as kissing a child on the lips or cheek.¹⁰
Adjusting the standard of care to implement a universal screening protocol for all newborns for CMV at birth can also help ensure newborns born with congenital CMV are diagnosed early, potentially improving treatment and outcomes.¹¹
Moderna is currently researching potential vaccine candidates to address CMV infection. Phase 3 of a clinical trial is underway in women of child-bearing age.¹²
Every hour, one child is permanently disabled by congenital CMV.¹³ Families dealing with the devastating impacts of this disease, like the Longos, should not have to face this difficult reality alone. We’re working towards a world where children and families have the support and protection from congenital CMV they need.
¹https://www.cdc.gov/cytomegalovirus/about/index.html
²Ibid.
³Ibid.
⁴https://www.nationalcmv.org/default.aspx
⁵https://www.cdc.gov/cytomegalovirus/about/index.html
⁶Ibid.
⁷https://www.ncbi.nlm.nih.gov/books/NBK233310/
⁸https://www.childrensmn.org/References/cds/congenital-cmv-guideline.pdf
⁹Ibid.
¹⁰https://www.nationalcmv.org/default.aspx
¹¹https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9680485/
¹²https://clinicaltrials.gov/study/NCT05085366
¹³https://www.nationalcmv.org/default.aspx