Nearly 90% of infants born with congenital CMV appear healthy at birth, and the vast majority will not have any visible symptoms or long-term complications. Health complications or disabilities caused by congenital CMV infection can sometimes appear roughly two or more years after birth.Infants and children who are infected with CMV after birth rarely present with symptoms and will not be exposed to any permanent complications or disabilities.
Newborn Testing and Diagnosis
Presently in the United States, there is no standard of care or routine protocols regarding screening newborns for congenital cytomegalovirus at birth. If a baby presents as symptomatic, meaning the baby has obvious physical symptoms of being born with a potential viral infection, cCMV can be diagnosed by testing a newborn baby’s saliva, urine, or blood using polymerase-chain-reaction (PCR) testing. Ideally these specimens are collected for testing before twenty-one days of life in order to confirm a diagnosis of cCMV infection because after three weeks, it is hard to determine if the baby could have contracted the infection through nursing or by exposure to siblings or others who may be passing the virus.
In 2018 the FDA approved the saliva swab as a recommended test for CMV in infants. It is recommended to follow up with a urine sample if the CMV test comes back as positive. If your baby is older than three weeks, families can ask for their child’s dried blood spot (DBS) be tested for a cCMV infection. Colorado only hold’s the DBS for 6 months, so it’s important to act fast.
In Colorado the CMV Network has been working with individual birthing facilities to implement recommendations on targeted screening and follow-up with families, including a “did not pass” on the newborn hearing screening. With this approach we can help identify infints who are cCMV Positive but look healthy. We have made nice progress, but it is ongoing.
A definitive diagnosis of CMV may provide the family an opportunity for antiviral therapy and focused surveillance hearing testing since these children are typically at-risk for further hearing loss. It can also help families answer questions of where the hearing loss may have come from and have an understanding of what risk factors to watch for. cCMV is an automatic qualifier for Early Intervention for families. And with a definitive diagnosis of CMV, we can connect families to other parents who have walked this path before to offer parent-to-parent support through The Colorado cCMV Family Network.
For more information regarding congenital Cytomegalovirus (cCMV) please visit one of the following resources:
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