Family health successes overshadowed by Medicaid debate

Published: Saturday, March 16 2013 2:04 p.m. MDT

Two-year-old Daisy Doutre became deaf after contracting a virus called cytomegalovirus in utero. Rep. Ronda Menlove, R-Garland, 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. Photo taken Friday, March 15, 2013.

Laura Seitz, Deseret News

At the beginning of the Utah Legislature 2013 session, The Deseret News pledged to focus its legislative coverage on five key issues that matter to Utah families: early childhood education, college and career readiness, economic development, health care and well-being, and intergenerational poverty. See what transpired in each of those areas during this year's legislative session.

SALT LAKE CITY — A power struggle with the governor on Medicaid expansion dominated the conversation on family health at the 2013 Legislature, but lawmakers did make friendly moves toward ensuring better health for Utahns and their families.

Infant testing, hearing aids and secondhand smoke consumption were among the issues considered and approved that will likely have direct impacts in the home.

Expectant mothers and mothers of newborn babies can expect to get more information on various health concerns, including cytomegalovirus and congenital heart defects, which can be detected at very early ages with the right tests.

Cytomegalovirus, or CMV, can lead to lifelong disabilities, including hearing loss or cerebral palsy. If identified early enough, though, CMV can be treated.

Sara Menlove Doutre, of Willard, had an otherwise completely healthy pregnancy, but two years after her second child, Daisy, was born, the girl received two cochlear implants after becoming completely deaf.

Daisy had failed an infant hearing test, but doctors didn't think anything of it at the time because many babies require multiple hearing tests. Yet just as the toddler was beginning to talk, the family noticed she wasn't hearing well and sought professional help.

A specialist was able to obtain blood kept on record by the state from Daisy's first blood test, which revealed CMV was present at birth.

"It's amazing to me that with my background as a special education teacher, I had never heard of it," Doutre said, adding that very few people, including physicians, know anything about CMV or how to combat it.

Doutre is assisting the Utah Department of Health with a statewide educational outreach campaign, made possible by the passage of HB81 — the first of its kind in the country. Alaska is the only other state to recognize a need for increased awareness, having recently passed a resolution regarding CMV. Utah is the first state to actually fund a program to dispense information to expectant mothers.

"It's exciting," Doutre said. "Families can take easy steps to treat this."

Her daughter is now learning how to talk and hear through the new devices, which is tricky as the implants produce a more electric or synthesized sound. The family is hopeful Daisy will be mainstreamed by the time she enters kindergarten.

But with the proper education and intervention, Doutre believes all of it could have been avoided and it is possible that Daisy could still hear naturally today.

Lawmakers also approved a pilot program for low-income children who could benefit from receiving hearing aids at an earlier age. Experts believe early treatment of hearing loss could lead to better social and education outcomes.

Medicaid controversy

By passing a bill that gives them a say in funding the optional provision of the Patient Protection and Affordable Care Act to expand Medicaid, lawmakers expect to be a part of the ongoing discussion until a decision is made.

No deadline exists for the choice, but the state stands to lose out on available federal reimbursement moneys the later the decision is made.

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