Yesterday, the Centers for Disease Control and Prevention (CDC) highlighted how to prevent the #1 viral cause of birth defects, congenital CMV (cytomegalovirus), on their homepage. According to the CDC, "In the U.S. more children have disabilities due to congenital cytomegalovirus (CMV) infection than other conditions present at birth."
I hope the CDC's work toward reducing congenital CMV will encourage OB/GYNs to make CMV prevention a part of their standard practice of care so women of child-bearing age will know how to reduce their chances of contracting it—namely by not sharing utensils with young children or kissing them around the mouth, and through careful hand-washing.
I didn’t know about CMV prevention until my daughter, Elizabeth, was born severely disabled by the virus in 1989. Though a happy little girl, Elizabeth had cerebral palsy and epilepsy, and was mentally, visually and hearing impaired. She died in 2006 at the age of 16 during a seizure. Elizabeth was profoundly affected by CMV, but other children's symptoms aren't so severe--but that doesn't remove the anguish of mothers who didn't know about CMV prevention until it was too late for their child.
When I spoke at the international 2008 Congenital CMV Conference at the CDC in Atlanta, GA, mothers came up to me afterwards with their children in wheelchairs or wearing hearing aids, and asked, “Why didn’t my OB/GYN warn me how to protect my baby from CMV?”
In the article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” Drs. Cannon and Davis state: “The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed.”
More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) admitted they don't routinely caution their patients about CMV, according to the study, "Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007."
According to a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness, only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.
To reduce chances of contracting congenital CMV, women of childbearing age should:
· Refrain from kissing children around the mouth--give them a big hug and a kiss on the top of the head instead.
· Refrain from sharing food and utensils with others, especially children.
· Wash hands diligently with soap and water after wiping runny noses, changing diapers, picking up toys, etc. If soap and water are not available, use alcohol-based hand gel.
Lenore Pereira, PhD, Founder of the Congenital Cytomegalovirus Foundation, University of California, San Francisco, said, “Ultimately, we hope that awareness will lead to universal testing of pregnant women and their babies, improved therapies, and vaccines for prevention of disease.”
In an effort to raise a congenital CMV prevention message, I wrote a light-hearted memoir about raising my daughter Elizabeth alongside her big, tomboy sister and a series of dysfunctional pets. It includes the unusual story of how a 100-pound, homeless dog found his way to Elizabeth’s couch plus interviews with the country’s leading CMV experts who speak about CMV prevention and emerging treatments. Anything But a Dog! The perfect pet for a girl with congenital CMV raises funds for CMV research and parent support at the National Congenital CMV Disease Registry if purchased through this link.
For more information about congenital CMV or how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, and the Director of the Congenital CMV Disease Registry, Clinic and Research Program. The Registry, located in Houston, TX, supports CMV research, disseminates information and provides a parent support group. Phone: (832) 824-4387.
To learn more about my daughter's life with CMV, her dog, and CMV prevention, see my television interview on USA 9 News.
How you can help stop CMV:
1. Print out the brochures and flyers found on the CDC website and at Stop CMV--The Action Network. Ask your doctors to post them on their walls or hand them out. The Stop CMV--the Action Network website has CMV awareness flyers available in several languages. Click here for the English one.
2. Write letters to the editors of magazines, your local newspapers and broadcast media (my Congenital CMV blog includes samples).
The next International Conference on Congenital CMV will be held in San Francisco, CA, in 2012.