Georgia mom pushes for increased newborn screenings for congenital CMV

CARROLLTON, Ga. - Visiting Children's Healthcare of Atlanta, Mason Barnes is a pretty typical 3-year-old, who just happens to be wearing two cochlear implants.

"He wakes up in the morning and he says, 'Where are my ears,' his mother, Brooke Barnes, says.  "And, we put them on and then go about our day."

Barnes' twins, Mason and Milly, were born in March 2020, both seemingly healthy.

"We had no idea that anything was wrong until he didn't pass his newborn hearing screening," she says.

Months later, Mason Barnes would be diagnosed with congenital CMV, or Cytomegalovirus."

"People don't realize how common CMV is," Brooke Barnes says.  "I mean, it's generally (like) a cold. But if you're a pregnant mother, it can have really serious side effects to your baby."  

Congenital CMV and hearing loss 

About 1 out of every 200 babies in the US is born with congenital CMV, and the virus is the leading cause of birth defects in children.

Children's Healthcare ear, nose and throat specialist Dr. Kristan Alfonso says hearing loss is common in children born with CMV.

"Some patients only have hearing loss on one side," Dr. Alfonso says.  "Some have (it on) both sides, some have mild hearing loss, and some have very severe hearing loss, in which they are actually deaf."

When Mason Barnes failed his newborn hearing test, Brooke Barnes says, their hospital did not offer a newborn screening test for congenital CMV. 

So, the hospital sent a blood sample to the CDC to test for the virus, and Mason Barnes was referred to an audiologist.

But getting the CDC test results and a diagnosis took months, and his mom says, Mason's hearing loss seemed to worsen.

"My theory is that he further developed the hearing loss from the time of being born to, you know, us getting that official profound hearing loss diagnosis," Brooke Barnes says.

There is an antiviral treatment given to newborns in their first month that might have prevented some of Mason's hearing loss.

"He wasn't eligible for the antivirals because we didn't even find out that CMV was the cause of his hearing loss until about 3 months," Mason's mother says.

To speed up diagnosis, the Georgia Department of Public Health is weighing requiring hospitals to provide targeted congenital CMV screenings for all newborns who fail a hearing test.

"So, whether or not they fail on the first or second try, then the goal would be that congenital CMV testing is then performed, to see if a patient has that virus that could be causing the hearing loss," Dr. Alfonso explains.

Congenital CMV testing

Brooke Barnes hopes increased awareness and congenital CMV testing will help other families get access not just to antivirals but early interventions, like the ones she says are helping Mason catch up to his hearing sisters and friends.

"So, we really quickly got him hearing aids at like 2 to 3 months old," Barnes says.  "But with the cochlear is when he could get the full speech sounds and hear all the things. I mean, he can hear just as good as we can."