SALT LAKE CITY - Sara Doutre took many precautions when she was pregnant with Daisy six years ago. Still, she passed on congenital cytomegalovirus, or CMV, a virus she'd never even heard of.
"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," Doutre said.
Ten years ago, Dr. Albert H. Park started studying CMV and helped develop a diagnostic test.
"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," said Park, the chief of pediatric otolaryngology at the University of Utah Health and Primary Children's Hospital.
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 Doutre and her mom, former Utah state Rep. 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.
"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," Doutre said.
"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," Park said.
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 29 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.
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