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New Florida law makes big strides in detecting hearing loss-inducing virus

SB 292 now requires hospitals to test for Congenital Cytomegalovirus if infant fails hearing test
Posted at 11:36 PM, Jan 01, 2023
and last updated 2023-01-02 20:10:51-05

ST. LUCIE COUNTY, Fla. — A new law took effect Sunday to help with early detection of a virus that causes hearing loss and other serious health issues in infants.

Senate Bill 292 requires hospitals and other licensed birthing facilities to screen newborn infants for congenital cytomegalovirus, or CMV, if the child fails the infant hearing test, something that previously wasn't required.

According to the Centers for Disease Control and Prevention, CMV is a common virus that infects people of all ages. More than half of adults have been infected with CMV by age 40, yet most people infected with CMV show no signs or symptoms.

"You kind of have cold, flu-like symptoms," said Dr. David Kay, a pediatric ear, nose and throat physician on staff at West Boca and St. Mary's Medical Centers. "For an adult, you just get it from being exposed to someone else who's sick. For a child, they acquire it in utero. If the mother catches it, then it's possible it gets transmitted to the infant, which is why, to contract congenital CMV, which is what we're talking about, you really have to do the test within the first few weeks of life."

CMV is the most common infectious cause of birth defects in the U.S., with about one out of every 200 babies born with congenital CMV infection. About one in five babies with congenital CMV infection will have long-term health problems.

"Neurodevelopment issues, vision issues, but the most significant ones we see are hearing issues," said Kay.

Kay also said because it is a virus, the symptoms of CMV get progressively worse as the child gets older, especially if it goes untreated, which is why early detection is key.

"By catching it early enough, you can start the infants on medication that would hopefully put the infection at bay and preserve their hearing long-term for the rest of their life," said Kay.

Until recently, however, early detection wasn't always happening in infants. Prior to SB 292, hospitals and other licensed birthing facilities weren't required to test for CMV, even if the infant failed the hearing test. Kay noted many infants fail their hearing test simply because of clogged ears or excessive ear wax but said it can be an indication something is wrong.

"Failing an infant hearing screening isn't a reason to be alarmed, but it is a reason to get in and get retested," said Kay.

That's what happened with Tessa and Buddy Hagan's daughter, Elizabeth. The St Lucie County family's daughter failed her hearing test at birth, but the family didn't know right away something was wrong.

"When she was born, they did the hearing test and she failed the hearing test, but they didn’t think anything of it," said Buddy Hagan, Elizabeth's father. "We had no clue what to expect."

It wasn't until several months later Elizabeth finally got a diagnosis and, consequently, help managing it.

"She did not receive any kind of therapies or anything like that until she was 9 months old," said Buddy Hagan.

"They definitely think the hearing loss is from CMV," added Tessa Hagan, Elizabeth's mother.

When asked if they believe Elizabeth's case could have been different had they known about the diagnosis from the start, both parents told WPTV they do.

Kate Hussey speaks to family whose daughter has CMV
WPTV's Kate Hussey speaks with Buddy and Tessa Hagan, whose daughter was diagnosed with congenital cytomegalovirus.

"Yes, definitely," both parents replied.

Samantha Isaacs and her son, Henry, have a similar story.

Henry, or Hank, originally failed his newborn hearing test, too.

"They almost seemed to just brush it off," said Isaacs, speaking of the hospital staff. "It was as if it is a normal thing, it happens all the time."

It wasn't until six months later Henry was finally diagnosed with congenital CMV and a brain malformation as a result of it.

"It's been a rollercoaster, honestly," said Isaacs. "It's a huge burden financially and emotionally when you get this diagnosis for a condition we're told is common, but we've never heard of. If you are found to have CMV before you're 6 months old, they can treat it. It doesn't reverse any damage, but it can stop it. It would have saved us a lot of time. We went six months before we had answers."

Kay believes the passage of SB 292 is a huge step forward.

"Hopefully this will have a big effect on reducing the amount of hearing-impaired children we see moving forward," said Kay.

Isaacs and the Hagans also agreed.

"I think it will reduce that earth-shattering blow, when your child is 6 months or a year old, and you're finally told, 'Oh, you caught a virus and that's what's happened,'" said Isaacs. "We were so excited [about the bill]. We were there the day that it passed. It was just this weight lifted. We had fought so hard and so long."

"The testing is great. I'm glad that there's a law there," agreed Tessa Hagan. "But there needs to be so much more education and research on it."

Isaacs seconded Hagan's words, both parents hoping this step forward is the first of many.

"Education is going to have to play a huge part of that, because if we test them at birth and they are positive, we've still missed the mark in educating them beforehand," said Isaacs.

People with CMV may pass the virus in body fluids, such as saliva, urine, blood, tears, semen and breast milk.

To learn more about CMV and how to reduce the chances of catching it, click here.

Families affected by CMV can also find support by visiting the Florida Department of Health here or the National CMV Foundation here.