Abstract Details

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9/26/2014  |   2:15 PM - 2:45 PM   |  Topical Session 3   |  Wyoming

Prevention and Early Intervention Through Policy: A Mother's Story

A quarter of a century ago prevention, treatment and hope existed for congenital CMV sufferers, but society is still not aware of congenital cytomegalovirus and the suffering continues. Early intervention is key, and the first line of defense is knowledge of the dangers of CMV to unborn children and how simple hygienic practices can reduce the chances of CMV in pregnant women. Jenny and Brent Bailey missed that chance at prevention since they had never heard of CMV until their daughter Caroline, was diagnosed, in utero, with symptomatic CMV in 1990. Early intervention has been key in Caroline’s story of successful treatment ever since. Caroline was treated in the womb and was the first infant in Houston to receive ganciclovir therapy. Caroline was born deaf, but the early CMV therapies prevented her from suffering multiple sequelae. Wearing hearing aids at four months of age; reading, speaking and signing at age three; and cochlear implantation at age 14 widened Caroline’s world. Today, Caroline is a college graduate and has a career as a GIS Analyst. Through the longitudinal CMV study, the ganciclovir study and the study to develop the cochlear emissions test, the Bailey family has spent 25 years adding to the scientific record. Jenny is now combining her experience as a CMV parent and experience from her career in government to work for a CMV bill in Texas. Caroline’s story is a beacon of hope and information for clinicians, parents, public health officials and policy makers. Thousands of other CMV families have been telling their stories, too, but CMV awareness is still abysmally low. It is time to approach awareness through policy to increase prevention and increase early intervention when infection occurs.

Jenny Bailey (Primary Presenter), jmb1553@gmail.com;
Jenny Meeden Bailey is a historian and policy analyst and began her career in 1981 as an intern for the Defense Policy Analyst of the Northeast-Midwest Institute in Washington, D.C. She practiced water district law in Texas for several years, and after a 17-year maternity leave, worked as a policy analyst for Houston’s then-Mayor Bill White. In 2012 as a Scholar-in-Residence at The African American Library at the Gregory School in association with Rice University, Bailey delivered a lecture series on one of the largest African-American cemeteries established in segregated Houston in the 19th century. Bailey holds a degree in political science from the University of Illinois and a Juris Doctor degree from the University of Houston. The mother of a daughter congenitally and symptomatically infected with CMV, Bailey has participated in medical research on CMV and has spoken frequently about therapies and educational strategies for deafness.

ASHA DISCLOSURE:

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.

Presentation:
319JennyBailey.pdf
319JennyBailey_x.pdf

Handouts:
319JennyBailey.doc