HARTFORD, Conn. (WTNH) — “Our whole world got turned upside down in a matter of minutes,” said Matt Bloom, whose infant daughter was diagnosed with cytomegalovirus or Congenital CMV.
The pregnancy, birth and first six months of Chloe Bloom’s life were all usual, but a year ago a seemingly common virus changed the lives of the now 18-month-old and her family forever.
“She’s happy as can be, always smiling and all of a sudden we’re being told she has a serious neurological condition, we’re like what? This is impossible,” Bloom said.
The newborn tested positive for cytomegalovirus or congenital CMV.
It’s a widely never-heard-of infection but the statistics prove it’s something to talk about it. According to the CDC, more than half of adults over the age of 40 have been infected but show no signs.
One in 200 babies are born with congenital CMV and one in five have long-term health problems, with some cases cause death.
“She has permanent disabilities,” Bloom said. “She sees seven different therapists every week.”
“Intellectual disabilities, she’s nonverbal, seizures, feeding issues and all the things that go along with that so she’s more on the severe end of the spectrum and I’m actually a public health nurse and I didn’t know about this,” said Amanda Devereaux, the program director of the National CMV Foundation.
CMV can be detected at birth through a saliva, blood or urine test.
Antivirals can help during a newborn’s first 30 days but screenings aren’t standard practice.
“Can help reduce hearing loss, help stop or reduce some of the brain damage,” Bloom said. “By the time we found out with Chloe it was too late.”
On Monday, Sen. Richard Blumenthal announced federal legislation called “STOP CMV 2023,” which is expected to be introduced in the United States House of Representatives this week.
The legislation calls for CMV awareness, universal screening for all babies in America, and 30 million dollars for research and education about this virus that is the number one cause of non-genetic deafness.
“There’s nothing red or blue about CMV or the damage it can cause,” Blumenthal said. “This bill should have bipartisan support.”
Testing made a difference for the family of News 8 Anchor Ann Nyberg last September but her granddaughter Bevin was only tested because she was born profoundly deaf.
“For seven months, twice a day, Bevin was given 420 doses of antivirals, each dose given with fingers crossed that they would help her,” Nyberg said. “My kids are taking this in, we’re taking this in. She had plaque in her brain that is never going to go away. Retinitis was working on one of her eyes.”
“Sounds kind of crazy to say but her losing her hearing completely at birth actually gave her a chance and us a chance to fight this virus and some of the effects it can cause,” said Mike Raymo, Bevin’s father.
For families the diagnosis and life-long impacts are permanent but their fight continues as advocates pushing for better awareness and prevention.
“When something comes at you, you have to do something about it and so here I am,” said Nyberg. “This is a start today.”