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Virus linked with hearing loss in children often goes untested

DURHAM, N.C. (WNCN) - It’s a virus that affects more than half of us at some point in our lives.

There’s a good chance you’ve never heard of it and many people never realize they’ve had it but the Cytomegalovirus can do serious damage to unborn babies.

Kaitlyn Hill loves reading to her mom.

In most ways she's a pretty typical 8-year-old girl, but her start in life was a little scary.

Doctors noticed an abnormality on an ultrasound midway through Kim Hill’s pregnancy. When Kaitlyn was born, doctors rushed her to the neonatal intensive care unit for oxygen and platelet transfusions.

Her parents learned she had congenital Cytomegalovirus.

"We had never heard of this virus before at all. Nobody had thought to test for it. Nobody routinely tested for it," recalled Hill.

"CMV is a virus over half of us have by the time were in our 30s but, if you get it for the first time during pregnancy it can be a problem for having a high risk of being transmitted to your fetus. When it does that it can cause brain damage and birth defects," explained Duke infectious disease expert Dr. Sallie Permar.

She said one of every 150 babies is born with CMV.

Three-quarters of them suffer no effects but 25 percent do.

"The most common is hearing loss, but other deficits can be microcephaly, brain damage. It causes cognitive and motor deficits," said Permar.

Kaitlyn is deaf in one ear and has hearing loss in the other.

Hill says her daughter has adjusted well, but she wants other parents to know about CMV before they end up in the same scary situation.

She wants doctors to educate pregnant women about the virus which is common among toddlers and can pass from person to person through body fluids.

Often CMV has no symptoms, so Hill never thought to take precautions around her toddler while she was pregnant with Kaitlyn.

"I ate after her. I drank after her," she said.

She also thinks newborns should be screened for the virus.

According to the national CMV foundation, nine states have laws about CMV.

Some require screenings for newborns who fail their hearing tests. Others require education for the public and health professionals.

North Carolina does not.

Rep. Nelson Dollar helps oversee North Carolina's Health and Human Services department.

CBS North Carolina asked whether it concerns him that the state mandates testing for other illnesses or conditions and not for CMV.

"We’re always evaluating the efficacy of, making sure we’re doing the appropriate screenings the appropriate testings for expectant moms," Dollar responded.

Dollar says some lawmakers are gathering information about CMV to determine whether the state needs to take action.

For now, though, those who are familiar with CMV and its consequences say they’re making their pregnant friends aware of the virus.

The sooner a child with CMV receives an antiviral treatment, the better the likely outcome.

Kaitlyn received medication soon after birth, and for the most part, she’s doing well.

Researchers are also working on a vaccine to prevent CMV.


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