Letter to TV Producers about CMV--H1N1 Not Only Virus to Fear

The H1N1 virus (swine flu) isn't the only virus pregnant women need to guard against.

Your audience would probably be interested to know how to protect their unborn children from the #1 viral cause of birth defects--congenital CMV (cytomegalovirus), which causes more birth defects than Down syndrome. Few women have heard of it and half of OB/GYN's surveyed admitted they don't warn their patients about it.

I can help you pull together a panel of congenital CMV experts and parents with children disabled by CMV to discuss how careful hand-washing and refraining from sharing utensils and towels with toddlers can reduce the chances of pregnant women contracting the virus.

I am the parent representative of the Congenital CMV Foundation and a STOP CMV rep. I didn’t know about CMV prevention until my daughter, Elizabeth, was born disabled by the virus in 1989. The moment I saw her, 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 and me. Two months later, she died suddenly during a seizure.

I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community of scientists and families about Elizabeth’s life. Mothers approached me after my speech, holding their young 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?"

Fewer than half (44%) of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 reported having counseled their patients how to prevent CMV infection despite these figures from the 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 (See: www.cdc.gov/cmv).

According 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.

CMV infection is very common in day care settings, but CMV usually does not harm the children who become infected. However, pregnant women who become infected with CMV are at high risk of passing the infection to their fetuses, who it can harm. Pregnant women can help prevent CMV by hand-washing and by refraining from kissing young children around the mouth.

The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually.

My two minute TV news interview about CMV: www.wusa9.com/news/health/story.aspx?storyid=80502&catid=28

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 if purchased through the National CMV Disease Registry. I also write about congenital CMV on my blog at: http://congenitalcmv.blogspot.com/

I am a full-time writer for the State University of New York at Rockland Community College, a member of its Speakers Bureau and a Cornell University graduate.

Please let me know if you would like the contact information for the country's leading CMV experts as well as the parents who have said they are willing to come on the show with their children (whose birth defects range from mild deafness to severe disabilities like my daughter).

To read about my CMV awareness work along with advice from internationally known CMV experts (one, Dr. Demmler-Harrison, said she would come on your show and I'm sure the others would if asked), visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

Sincerely,

Lisa Saunders

Suffern, NY 10901

845-574-4244 (W)

saundersbooks@aol.com

http://www.authorlisasaunders.com/

Other sources of congenital CMV information:

The contact information of other CMV Parents willing to come on the show with their children is also 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.

To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm

CMV CDC site: http://www.cdc.gov/cmv/

“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

2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612

Article quoting OB/GYN why CMV prevention isn't discussed in Fit Pregnancy Magazine, June/July 2008 issue: Protect Your Baby From A Tot-Borne Virus

For more information about congenital CMV and how you can protect y our pregnancy, contact Gail J Demmler-Harrison MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org, (832) 824-4387 or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Demmler-Harrison 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.” Anything But a Dog! The perfect pet for a girl with congenital CMV raises funds for CMV research if purchased through the National CMV Disease Registry at: www.unlimitedpublishing.com/cmv

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 He is the co-author of "Washing our hands of the congenital cytomegalovirus disease epidemic,” which can be seen at: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379 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.”

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. She 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.”

Quotes and advice:

One OB/GYN was quoted in FitPregnancy magazine 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.”

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.


“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.”

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