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Congenital Cytomegalovirus (CCMV)

Is the most common infectious cause of birth defects in the United States, and Massachusetts doesn’t universally screen newborns for it.

Educate

Why should we care about CMV?

About one 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

Educate

What is CMV?

  • CMV or Cytomegalovirus is a member of the herpes virus family. 
  • It is very common; 50-80% of the U.S. 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. 
  • Once a person has had CMV, it stays there for life and can reactivate. It is also possible to be reinfected with a different strain of CMV.
  • It is more likely to occur in minority communities, especially young mothers.
  • There is currently no vaccine.

Who is at risk for CMV?

  • All pregnant women, but especially those…
    • Who have young children in the home.
    • Childcare workers, early interventionists, early childhood providers.
    • Healthcare workers.
  • People with compromised immune systems are also at risk for CMV infection.
  • Nearly 1 in 3 children are infected by age 5.
    • 8% - 20% of childcare staff are infected with CMV each year.
    • 40% - 70% of childcare staff have evidence of a prior infection.

Awareness vs. Incidence

CMV awareness is dangerously low as compared to other congenital diseases, but just how low is it?

What are the signs of CMV?

What Treatments are available for CMV?

You can reduce the risk of acquiring CMV, learn how:

Prevent

Prevent

If you are pregnant or planning to become pregnant:

CMV is common in children and can be found in especially high amounts in young children’s saliva and urine.
Avoiding contact with saliva and urine from young children might reduce the risk of CMV infection.
Learn More

CMV is preventable

Following the simple steps below can reduce the risk of CMV in pregnancy:

Further Prevention Resources

Screen

Screen

Screening can lead to better outcomes

Children who are screened at birth and found to be CMV positive can start antivirals sooner - A crucial component to optimizing function.

Screening FAQ

Congenital CMV screening of an infant is simple and painless. It is accomplished using either a urine or saliva sample. The inside of your baby’s cheek is swabbed when a saliva sample is taken. It is very important that this swabbing be done at least 90 minutes, ideally 120 minutes, after feeding as CMV could be present in breastmilk.

This testing is time-sensitive and the urine or saliva sample must be taken before your baby is 21 days old to be accurate for the detection of congenital CMV infection. The sample may be taken at your medical providers’ office or directly at a lab. Please contact your baby’s doctor as soon as you are told you need this testing to be done. Dried blood spots are still being studied for cCMV testing in newborns after 21 days have elapsed.

If the clinic or hospital is a client of ARUP, they can order the OraCollect OC-100 swabs from ARUP client supplies (item #49295). If they are not ARUP clients, they should contact their reference lab for kit 2 supplies or contact the kit vendor directly (DNA Genotek). If kits for PCR testing on saliva are not available, a PCR for CMV can be sent on a urine sample.

Many insurance companies, including Medicaid, report that this testing is covered. The CPT code for qualitative CMV detection by PCR (via urine or saliva) is 87496, which is considered to be the most sensitive for congenital CMV testing. CPT code 87497 represents quantitative CMV detection by PCR (via urine or saliva) and may be used by Viracor-IBT Laboratories. 

cCMV can only be diagnosed by testing a newborn’s urine or saliva within the first 21 days of life. If an infant’s urine or saliva is tested later than that, it will be impossible to determine if the infection was present at birth or acquired later, since CMV is a common virus (CDC, 2020).

In Massachusetts, routine newborn screening for congenital diseases is required and occurs immediately after birth. cCMV is more common than many of the 66 conditions screened for in an infant after birth; yet, in Massachusetts, cCMV is not included during this process.

Currently in Massachusetts, there is no statewide policy on cCMV screening. In a few hospitals, infants are screened for cCMV only if they fail the newborn hearing screen. This is called targeted-screening. More than half of MA birthing hospitals have no screening program at all, based on a recent survey.

No. 87% of infants born with cCMV are asymptomatic at birth. The most common health problem that cCMV causes is progressive hearing loss. In a recent study, 43% of infants with CMV-related sensorineural hearing loss were missed with targeted screening (Fowler et. al., 2017).

Why should newborns be universally screened for cCMV?

Care

Care

Parent Support

Dealing with a shocking diagnosis doesn't have to be coped with alone.

    CMV Speaks: A Podcast by the National CMV Foundation