Few women of child-bearing age realize that plain old soap and water can prevent the #1 viral cause of birth defects, congenital cytomegalovirus (CMV).
Although CMV causes more birth defects than Down syndrome, more than half of OB/GYNs surveyed admitted they don't routinely caution their patients how to avoid the virus (survey conducted by the American College of Obstetricians and Gynecologists).
Women who care for young children are at 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.
According to the Centers for Disease Control and Prevention (CDC):
Every hour, congenital CMV causes one child to become disabled
Each year, about 30,000 children are born with congenital CMV infection
About 1 in 750 children is born with or develops permanent disabilities due to CMV
About 8,000 children each year suffer permanent disabilities caused by CMV
Congenital CMV (meaning present at birth) is as common a cause of serious disability as Down syndrome, fetal alcohol syndrome, and neural tube defects. For more info, see http://www.cdc.gov/cmv/
Despite these figures, according to the 2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," a survey about newborn infections was given to women in seven geographic locations. "Of the 643 women surveyed, 142 (22%) had heard of congenital CMV...but most could not correctly identify modes of CMV transmission or prevention."
In order to reduce the spread of CMV infection, women of childbearing age should refrain from kissing their children around the mouth, sharing food and utensils with them, and they must wash hands their hands diligently with soap and water after wiping runny noses, changing diapers, etc. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.” For alcohol-based hand sanitizers to be effective, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol.
I’m a mother who didn’t know about CMV prevention until it was too late for my daughter, Elizabeth, who was born with congenital CMV in 1989. The moment Elizabeth was born, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” He was right.
By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband, Jim, and me. Two months later, she died suddenly during a seizure. Jim cried, “No one is ever going to look at me again the way Elizabeth did.” No other parent should have to feel that way—especially when there are precautions one can take to avoid this kind of suffering.
After speaking at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about Elizabeth’s life with CMV, mothers approached me holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"
One OB/GYN was quoted in FitPregnancy magazine (June/July '08) as saying, "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.” Others simply don’t realize the prevalence of congenital CMV. In their 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.”
Gail J Demmler-Harrison MD, Professor of Pediatrics, Director of the Congenital CMV Disease Registry and Research Program, Baylor College of Medicine, Houston, Texas, said, “I have spent my entire medical professional career studying the effects of congenital CMV on children and helping these children and their families who have been touched by congenital CMV. It is the most common congenital infection in this country, yet ironically, most people have never heard of CMV, until it affects them personally. Every woman of childbearing age should know about CMV, especially the most common ways of catching CMV, and, most importantly, the simple ways she and her family can take to protect her unborn baby from CMV while pregnant.”
“It is important to remember that CMV is most commonly spread in the family setting. Reason being is that in the home environment, families are more casual about hygiene and for instance may share eating and drinking utensils, food and beverages, or be hurried during diaper change and forget to immediately wash hands afterwards,” states Carol M. Griesser, R. N., Research Nurse and Clinical Coordinator, Congenital CMV Longitudinal Studies, National Congenital CMV Disease Registry, Baylor College of Medicine, Texas Children's Hospital.
Griesser suggests ways to keep the home and daycare environment safer: “Unlike some other viruses, cytomegalovirus is a very fragile virus that usually does not live on a surface beyond about 30 minutes time. Active CMV can be destroyed or rendered inactive by washing any contaminated objects with a 10% bleach solution (followed by rinsing the object). Objects that can't withstand the bleach solution disinfectant method, such as stuffed animals and pillows, should be put outside in direct sunlight for about a couple of hours.”
Lenore Pereira, PhD, Founder of the Congenital CMV Foundation, University of California, San Francisco, and co-organizer of the 2008 Congenital CMV Convention, 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 warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research and parent support if purchased through the Registry at www.unlimitedpublishing.com/cmv About.com reviewed Anything But a Dog! saying, "Sheds light on a disorder that is preventable and not talked about enough…If you're an animal lover, you'll love the critter tales as much as the special-needs storyline…really lifted my spirits." To read an excerpt, visit: http://anythingbutadog.blogspot.com/
Please tell everyone about CMV and don’t forget to wash your hands!
Lisa Saunders About the author: Lisa Saunders is a full-time writer for the State University of New York at Rockland and a member of its Speakers Bureau. She is a STOP CMV and Congenital CVM Foundation representative. She is the author of "Anything But a Dog! The perfect pet for a girl with congenital CMV"; "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/basset hound. Visit Lisa at http://www.authorlisasaunders.com/
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.
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 firstname.lastname@example.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 email@example.com
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 firstname.lastname@example.org, 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