What is cCMV?

CMV or cytomegalovirus is "the most common virus most people never heard of" (Demmler-Harrison).
More than half of the US population has had a CMV infection by 40 years old (CDC).
It is typically harmless and can cause cold-like symptoms; 90% of adults and many children show no symptoms at all.
When a baby is born with a CMV infection, it is called congenital CMV (cCMV).

Why should we care about cCMV?

About 1 out of every 200 babies is born with congenital CMV infection. Of these babies, around 1 in 5 will have long-term health problems such as:

▪ Hearing loss

▪ Mental disabilities

▪ Physical disabilities

▪ Vision loss

▪ Seizures

▪ Cerebral palsy

▪ Death

Who is at risk for cCMV?

All pregnant individuals, but especially…
- Those who have young children in the home.
- Childcare workers, early interventionists, early childhood providers.
- Healthcare workers.

read our Massachusetts parent stories here

2021-12-08 11_16_49-Ryan Benoumad - Google Docs

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.

Check OUt our latest news

Cytomegalovirus lies dormant in most US adults and is the leading infectious cause of birth defects, but few have heard of it

Yahoo News, May 2023
"While some birth centers provide early CMV testing, most U.S. states do not mandate newborn CMV screening. My team and I surveyed 33 hospitals in Massachusetts from late 2020 to early 2021 and found that less than half are consistently screening infants for cCMV infection. Of those, only a few have a written testing protocol. Only two hospitals performed cCMV screening on all infants admitted to the newborn nursery."

Massachusetts cCMV Coalition

Home