Forty thousand babies are born with CMV in the U.S. About one in five of those will develop long-term health problems. A mom who passed the virus to her daughter has made it her mission to raise awareness, increase screening, and push for treatment. And, she's already made huge progress.
Sara Doutre took many precautions when she was pregnant with Daisy six years ago. Still, she passed on CMV, a virus she'd never even heard of.
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Sara said, "We found that CMV could cause a progressive hearing loss and while Daisy only had a mild loss in her right ear at that time, we knew it would progress quickly."
Ten years ago, Albert H. Park, MD, Chief Pediatric Otolaryngology at the University of Utah Health and Primary Children's Hospital, started studying CMV and helped develop a diagnostic test.
Dr. Park explained, "We saw that quite a few of these children who previously had no diagnosis, no one knew what the cause of their hearing loss was, we found out that it actually could be attributed to this virus."
Dr. Park has become a passionate advocate for CMV screening, which has to be done within two to three weeks of birth. He teamed up with Sara and her mom, former state representative Ronda Menlove, to pass a bill mandating CMV screening for babies who fail the newborn hearing test. With that screening, Daisy could have started therapy and an antiviral drug sooner.
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"Had we been given that option when she was an infant, we would have taken that option. We would have used the antivirals to help prevent that progression of her hearing loss or prevent hearing loss," said Sara.
Dr. Park continued, "I'd love to be at a stage where I don't see kids when they're four or five with progressively worsening hearing loss from congenital CMV because we have interventions or ways to prevent that from happening."
Dr. Park has FDA approval to start a clinical trial of a CMV antiviral to stop hearing loss. He hopes to start enrollment this winter.
The trial will run in Utah and twenty nine other sites. Iowa and Connecticut followed Utah's lead with legislation mandating CMV screening for infants who fail the newborn hearing test. Illinois and Oregon also require education. For now, pregnant moms can lower their risk for CMV infection by hand washing frequently and not sharing straws, utensils, food or drink, since CMV is transmitted through bodily fluids.