Several times a week, my mom, Lisa Saunders of Suffern, N.Y., wakes up around 5 a.m., and logs into her AOL account, hoping to make a difference in another mother's life that morning. She isn't online shopping, or surfing the Web for funny YouTube videos, she is desperately trying to spread awareness about the #1 viral cause of birth defects, congenital cytomegalovirus (CMV), the virus that eventually took my younger sister's life when she was only 16-years-old.
Because of her determination to prevent the spread of this virus, which causes more birth defects than Down syndrome, my mom takes time off of work, without pay, to talks at the Centers for Disease Control and Prevention (CDC), to nursing organizations, colleges such as Johns Hopkins, and other groups, to explain how to avoid contracting CMV.
My younger sister, Elizabeth, is the reason my mom sacrifices her time and energy to warning other mothers how to prevent the virus that handicapped her child. Besides writing to politicians, OB/GYNs, and connecting with other mothers of children with CMV through Facebook and other socialnetworks around the world, my mom has also written a humorous book, "Anything But a Dog! The perfect pet for a girl with congenital CMV," to warn others about the virus.
My mom writes:"The moment Elizabeth was born, I felt a stab of fear. My immediate thoughtwas 'Her head looks so small, so deformed.' The neonatologist declared, 'Your daughter has profound microcephaly--her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself.' He concluded that Elizabeth'sbirth defects were caused by congenital cytomegalovirus (CMV)--a virus that may have no symptoms for the mother, known as a 'silent virus,' or it maypresent itself with mild to severe flu-like symptoms to a mother during pregnancy."
More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists admitted they don't routinely caution their patients how to avoid the virus. Women who care for young children areat a greater risk for catching CMV because preschool children are the majority of the carriers. Although it is usually harmless to healthy individuals, it can be devastating to a developing fetus.
If you are interested in hearing more about my mom's mission to spread awareness by reaching one mother at a time, if that's what it takes, you can contact her directly at saundersbooks@aol.com or read this story about her in a New York paper at:
Her blog, http://congenitalcmv.blogspot.com/, contains links to the CDC's Web site and other organizations for more facts about CMV.
Thank you for your consideration.
Jackie Saunders
Mom's bio: Lisa Saunders is a full-time writer for the State University of New York at Rockland, a member of its Speakers Bureau and is a STOP CMV and Congenital CVM Foundation representative. A Cornell University graduate, she is the author of the humorous memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV" as well as "Ride a Horse, Not an Elevator" and "Ever True: A Union Private and His Wife." Lisa and her husband, Jim, reside in Suffern, New York, with their Beagle/Bassett Hound. See Lisa's short TV news interview about CMV at: www.wusa9.com/news/health/story.aspx?storyid=80502&catid=28
See her books and articles at http://www.authorlisasaunders.com/
See her books and articles at http://www.authorlisasaunders.com/
Source info about CMV:
Other CMV Parents willing to be contacted about CMV are available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003.
“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379
Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007: www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm
The 2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612
Article on CMV in Fit Pregnancy Magazine, June/July 2008 issue, Article: Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development
For more information about congenital CMV and how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387.
The 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.gov
The other 2008 Congenital CMV Conference co-sponsor, CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years.
Prevention through hand-washing and hand sanitizers: “It is best to wash your hands with soap and clean running water for 20 seconds. However, if soap and clean water are not available, use an alcohol-based product to clean your hands. Alcohol-based hand rubs significantly reduce the number of germs on skin and are fast acting.” See: http://www.cdc.gov/cleanhands/ “If soap and running water are not available, you may use alcohol-based hand gel.” See http://www.cdc.gov/ncbddd/pregnancy_gateway/infection.htm) For a hand sanitizer to be effected, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol, See http://www.cdc.gov/ncidod/EID/vol12no03/05-0955.htm
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