What is CMV?

CMV is the most common infectious cause of birth defects in the United States. About 1 out of 5 babies with congenital CMV infection will have birth defects or long-term health problems, the main one being hearing loss.

June is "National CMV Awareness Month." The CDC takes the month of June to increase awareness of congenital cytomegalovirus among healthcare providers, pregnant women, and parents.

The most common signs of congenital CMV at birth are:

-Rash

-Jaundice (yellowing of skin or whites of the eyes)

-Microcephaly (Small head) ---> This is what made the doctors test Aiden for CMV in the first place.

-Hepatosplenomegaly (enlarged liver and spleen)

-Seizures

-Retinitis (damaged eye retina)

Long term health issues caused by CMV are:

-Hearing loss

-Seizures

-Developmental and motor delay

-Microcephaly

-Vision loss

The main long term health issue is hearing loss. Some babies can have hearing loss at birth or can develop it later, even babies who passed the newborn hearing test or didn’t have any other signs at birth.

1 out of 200 babies are born with congenital CMV and 1 out of 5 of those babies have long term health effects.

Because of Aiden's microcephaly diagnosis, he unfortunately falls in the 1 out of 5 category.

Most people with CMV infection have no symptoms and aren’t aware that they have been infected. If you are pregnant and get infected with CMV, you can pass the virus to your baby during pregnancy. This can happen when you are infected with CMV for the first time or again during pregnancy.

The most common source of CMV infections are young children. Especially young children who attend daycare or school. By the age of 5 years old, 1 in 3 children have been infected with CMV, but usually does not show symptoms. The virus can stay in a child’s body fluids like saliva and urine for months after the infection. People who are around young children a lot are at greater risk of CMV infection.

When I was pregnant with Aiden, I had one school age daughter, my son had just started an MDO program, and a 1 year old at home. I could not avoid being around young children and neither can most people. What I do wish though, is that I would have been educated on CMV and I could have taken precautions to prevent an infection.

Congenital CMV infection can be diagnosed by testing a newborn baby’s urine (preferred specimen), saliva, or blood. These specimens must be collected for testing within 2 to 3 weeks after the baby is born to confirm a diagnosis of congenital CMV infection.

The silver lining of Aiden's NICU stay is that we found out about his CMV diagnosis. Had we had just went home, who knows if he would have been tested. Ultimately the doctors decided to take a urine sample to figure out why he was born with a smaller then usual head size. They did try a blood sample first, but it came back inconclusive.

For babies with signs of congenital CMV infection at birth, antiviral medications (primarily valganciclovir) might improve hearing and developmental outcomes. Valganciclovir can have serious side effects and has only been studied in babies with signs of congenital CMV infection. There is limited information on the effectiveness of valganciclovir to treat infants with hearing loss alone.

I did opt for Aiden to take the Valganciclovir. I would do everything I can to help him have a chance to reduce the risk of hearing loss. Fortunately, he started at a week and half old which is detrimental for how effective the valgan would be! Aiden did end up passing his newborn hearing screening, but has failed some hearing tests since with pitch issues. I will save that for another post!

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