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Families impacted by CMV rejoice at new law aimed at screening for the virus

Families impacted by CMV rejoice at new law
Posted at 10:54 PM, Dec 29, 2022
and last updated 2022-12-29 23:29:17-05

TAMPA, Fla — According to the National CMV Foundation, every hour, a child is permanently disabled by congenital Cytomegalovirus or CMV.

It's an infection many probably haven't heard of—though CDC numbers show that by age 40, half of the adults have had it. And while they say the illness is often mild and mistaken for a cold, it can also cause life-altering complications in newborns.

It's a story Valrico mom, Crystal Burnham, knows all too well.

"About six months into my pregnancy, I was sick with a regular cold," she said.

For Burnham, that cold turned out to be CMV, which she passed on to her now four-year-old son Finan.

"From the CMV, he got microcephaly, which is the small head. He got the hearing loss; he got vision impairment. He has the cerebral palsy, his mobility is limited, [and] the right side of his body he can't use. He has epilepsy," she said.

Burnham says she didn't know much about the disease until after Finan was born with complications.

And North Florida Mom, Samantha Isaacs, says the same.

"It just is that earth-shattering news that changes everything forever," she said.

Isaacs tells ABC Action News that they were tipped off to a possible problem with her son Hank—after he failed three newborn hearing screenings in the hospital.

But it would still take six months, a visit to an audiologist, and testing with a geneticist before Hank was diagnosed.

As a result, she says Hank, who is now seven, has since developed epilepsy, feeding issues, and other complications with his brain function.

"It's a rare brain malformation that has a limited life expectancy, so go through that anticipatory grieving," she said.

To prevent heartbreaking stories like these, in 2023, a new law will require state hospitals and licensed birthing centers to screen for CMV—if a newborn fails their mandated hearing tests, as hearing loss is often a common indicator of the illness.

It's a welcome change that both moms say will help catch the infection earlier and raise awareness

"It's frustrating to know that this is such a silent issue when it has such massive impacts," said Isaacs.

The National CMV Foundation says one of the best ways to avoid catching CMV while pregnant is to avoid sharing utensils, food, and toothbrushes, wash your hands, and avoid kissing young children or putting pacifiers in your mouth. To learn more about CMV and the foundation, click here.

In the meantime, Isaacs has also created HankStrong, a Facebook page designed to provide updates on Hank that has turned into a support group of sorts for families dealing with CMV.

Read new law requiring state hospitals and licensed birthing centers to screen for CMV;CLICK HERE.