SALT LAKE CITY — Sara and Will Doutre thought they did everything right when they found out they were having a second child.
They secured excellent prenatal care and were insured to cover anything and everything that could have happened to their baby before, during or after birth.
Ultimately, however, what happened was unforeseen by any of their attending doctors, nurses or other staff.
Daisy, who is nearly 2 years old, slowly lost her hearing and at the end of last year, received two cochlear implants to help manage her condition that physicians now believe was caused by cytomegalovirus, which was contracted by her mother during pregnancy and passed to her in utero.
"It is the No. 1 infectious cause for hearing loss in children," said Dr. Albert Park, a pediatric ear, nose and throat doctor at the University of Utah. He said diagnosis of cytomegalovirus, or CMV, is tricky, but most effectively done before a child reaches 3 weeks of age.
Rep. Ronda Menlove, R-Garland, has introduced a bill at the state Legislature that would establish a statewide educational program to inform pregnant women and others who deal with young children who may be infected, of the issues surrounding CMV, as well as direct physicians to test for it in babies who fail newborn hearing screenings, among other provisions.
HB81, she said, "is important to help address the situation of an infection that causes preventable disabilities in children."
Had the Doutre family been aware of the infection earlier in Daisy's development, her condition might not have been as severe, as various treatments and interventions have been proven beneficial, Park said.
"Other parents deserve to know about this and they deserve to know before their child loses all of their hearing," Sara Menlove Doutre, the daughter of the bill sponsor, said Tuesday.
Every child born in Utah undergoes newborn screening, in which a tiny amount of blood is drawn from its heel to check for an array of metabolic disorders. The samples are stored with the Utah Department of Health for two years. Physicians can draw on the sample to determine a CMV diagnosis during that time, but Park said it is less reliable than other, perhaps more expensive tests.
He said each year in Utah approximately 180 children are infected with the virus, which is a herpes variant. About 20 of those would be expected to have mild to severe hearing loss due to the infection, which can also cause other disabilities in children as they develop.
Annie Culley, of Tooele, tested positive for the virus while pregnant and delivered a stillborn child at 25 weeks. She said she would have loved to know more about the virus prior to losing her baby.
Others testified to the Utah House Health and Human Services Standing Committee Tuesday, relaying effects CMV has had on their children, including varying degrees of hearing and vision loss, latent cerebral palsy and delayed or otherwise missed developmental milestones.
The virus is transmitted through saliva, urine and blood of an infected person, often a young child, but it can be prevented by proper hand washing, not sharing food or kissing, and care when changing diapers, Menlove said.
"Pregnant women who are aware of the virus can be more careful around young children," she said. The bill aims to provide education to child care facilities, nurses at public schools, religious organizations that offer children's programs, and to others who work with young children on a regular basis.
Increasing education about the virus among mothers-to-be, physicians and medical staff alike would likely provide better opportunities to test, intervene and perhaps prevent often debilitating defects, she said.
"Children who are born deaf now have very different opportunities than if they were born 20 years ago," said Karl White, director of the National Center for Hearing Assessment and Management and a professor of psychology at Utah State University, where the center is housed. He said earlier identification of hearing problems can better be treated with available technologies, providing often the same outcomes as hearing-abled individuals.
"The world has changed dramatically for deaf children," he said, adding that Utah has been at the forefront of related advancements. "There are no limits if they get proper education and early treatment."
Utah would be the first state to address CMV with official legislation. Utah Department of Health Epidemiologist Dr. Robert Rolfs said the virus is "inadequately understood" among health professionals as well as the general public. Other states are discussing similar options but have yet to pass any laws regarding CMV.
Members of the committee voted unanimously in support the bill and it passes to the House of Representatives for further consideration.