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Advocating for CMV awareness and policy
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Note from Lisa 

I am a former licensed daycare provider who was unaware that cytomegalovirus was an occupational risk for daycare educators. (The above photograph of my daughter Elizabeth, born severely disabled by congenital CMV, was taken 27 years ago in December of 1989.) 

Shortly after moving to Connecticut from New York in 2010, I received a call from a distressed grandmother about her grandson born disabled by congenital CMV (she found me when googling CMV). Her daughter-in-law was a college student interning at a day care center to earn credits toward her degree. She, too, was unaware that she was putting her pregnancy at greater risk.  When I visited the family in the hospital, the attending nurse asked me, "Knowing what you do, why don't you start a CMV awareness campaign?"

I explained to her that the entire CMV community has been trying for years to raise awareness and will continue to do so until there is a vaccine or doctors make CMV prevention education a "standard practice of care." Learn more about CMV awareness in the recent New York Times article, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed."  

According to the Centers for Disease Control and Prevention (CDC), "People who care for or work closely with young children may be at greater risk of CMV infection than other people because CMV infection is common among young children..." 

In 2012, the American Academy of Pediatrics (AAP) stated: "In view of the risk of CMV infection in child care staff and the potential consequences of gestational CMV infection, child care staff members should be counseled about risks. This counseling may include testing for serum antibody to CMV to determine the child care provider’s protection against primary CMV infection..." (Page 145, AAP Red Book)

If you have a moment, I'm wondering if you could send me your state's day care licensing and health department contacts (as far as I know, Utah is the only state that has CMV prevention materials in day care centers). Several states have recently passed CMV awareness laws (see below), but getting the information to trickle down into day care centers is still a challenge. Several people have offered to reach their state's day care licensing divisions as soon as they learn how to proceed and what to ask for. 

If you have a moment, please see below my signature for available CMV resources and the type of information I'm requesting. If you prefer keeping up to date with this work through Facebook, I have created this new page: Facebook.com/CongenitalCMVnews

I would love any of your ideas for ensuring CMV prevention education. If you are looking to raise CMV awareness yourself, one idea is to reach out to your local organizations and media letting them know that January is National Birth Defects Prevention Month (NBDPM). The NBDPM committee included this Cytomegalovirus (CMV) Pamphlet (English , Spanish) among its materials to "assist state program staff and others interested in promoting birth defects prevention." Now would be the time to ask your state's Department of Health to include CMV prevention on its website (a lot can be accomplished in your state when your Department of Health recognizes CMV as a disease to prevent).

Here is my CMV Christmas wish I posted in the "Letters to Santa" mailbox  in Mystic, Connecticut, where I live. It tells the story of my daughter's life, death, and my hope for future babies. If you enjoy watching music videos, my friend Debra Lynn Alt, the former lead singer for the Rolling Stone magazine club band, let me use her song, "A Voice for Sam," in my CMV prevention video: Girl with congenital cytomegalovirus (CMV).

Happy holidays to you all! 

Sincerely,  
Lisa Saunders
Parent representative 
Congenital Cytomegalovirus Foundation

PO Box 389, Mystic, CT 06355  
       
This simple flyer created by the National CMV Foundation is ideal for hanging on day care center walls. Contact the Foundation for this jpeg at nationalcmv@gmail.com or visit their page of downloadable flyers
In “Prevention of Maternal–Fetal Transmission of Cytomegalovirus,” Stuart P. Adler, MD, states: "For seronegative pregnant women who are at high risk because of exposure to a young child in the home or in large group childcare, hygienic precautions are simple, inexpensive, and highly effective."

These are the kinds of things I'm hoping day care centers will provide for their workers: 
  1. Warning: "Providing childcare to children under two years of age may be hazardous to your unborn baby--learn how to protect your pregnancy." Daycare.com provides this advice for childcare workers
  2. CMV prevention education added to a childcare center’s handbook and website.
  3. CMV prevention discussed at center’s parent orientation.
  4. CMV prevention brochures (see Utah's brochure for childcare providers). 
  5. Signs about CMV prevention hanging in day care centers so parents can also see them when they pick up their children. (See sample above created by National CMV Foundation
  6. Consider producing something lighthearted to watch, like this funny video, "Interview with a Germ, Rhonda Rhinovirus," created by a church for their workers in church nurseries. 
  7. My CMV education materials include:
Would you be able to send me the following information with links?
  1. Your State
  2. State CMV Bill? Status?
  3. Day Care Licensing Division 
  4. Day Care licensing contact person with email and/or phone.
  5. Department of Health's CMV webpage (if any)
  6. Occupational Safety and Health Administration (OSHA):  Your state's office
  7. Your name, title (parent/health professional, and email address (if you are willing to have it posted on my blog).
To see the states I already have, click on this blog page). 
My next scheduled talk:
Society of Maternal Fetal Medicine

Caesars PalaceLas Vegas, NV (January 26, 2017)
"Congenital CMV and Research"
 
CMV Legislation and Foundations 

U.S. LEGISLATION
 
In 2011, the U.S. Senate recommended that “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children” and designated the month of June as "National Congenital CMV Awareness Month." 

STATE LEGISLATION
“In five states (Hawaii, Illinois, Tennessee, Texas, and Utah), laws regarding CMV awareness have been passed that require healthcare providers to discuss CMV with pregnant women, and in eight additional states, CMV legislation has been proposed or is in discussion,” states Gail Demmler-Harrison, MD in her article, "Cytomegalovirus: The Virus All Pregnant Women Should Know About Now"(Dec. 2. 2016).

In 2015, Connecticut became the second state (after Utah, 2013) to pass a law requiring testing newborns for CMV who fail their hearing screen. Prevention education was not passed because of funds, though awareness is increasing because of the testing. The Connecticut Chapter of the American Academy of Pediatrics (AAP) held a webinar, "Update on Statewide Neonatal CMV Screening," on December 8, 2015. To view these slides or listen to the audio by Dr. Nicholas Bennett, Medical Director of Infectious Diseases and Immunology, Connecticut Children's Medical Center, go to: http://ct-aap.org/2015

U.S. ORGANIZATIONS THAT WORK TO STOP CMV
 
Gail J Demmler-Harrison, MD, Professor, Pediatrics, Section Infectious Diseases, Baylor College of Medicine, Attending Physician, Infectious Diseases Service, Texas Children's Hospital, CMV Registry, CMV Research and CMV Clinic. The CMV Registry supports CMV research, disseminates information and provides parent support. Visit: Dr. Demmler-Harrison’s Blog. Contact: 832-824-4330, gjdemmle@texaschildrens.org
 
“At the National CMV Foundation, we work to inform and educate others on specific prevention measures to protect against the risk of CMV infection.” They have a great CMV Q. and A; simple flyers for downloading, and ways to get involved
 
Lenore Pereira, Ph.D., Founder of Congenital Cytomegalovirus Foundation, and Professor, Cell and Tissue Biology Department, University of California San Francisco.  The Congenital CMV Foundation raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine. Excellent research papers available on the website. Contact: lenore.pereira@ucsf.edu
 
National CMV Registry for Pregnant Women (part of the CMV Research Foundation)
Stuart Adler, M.D., Professor Emeritus of Pediatrics and Professor of Microbiology and Immunology, Virginia Commonwealth University. He organized the National CMV Registry for Pregnant Women. Contact: sadler@vcu.edu
 
FOUNDATIONS IN OTHER COUNTRIES: 
Sayaka Nakai, with Thousand Books Project Team of Tokyo, has been translating my book about my daughter, Anything But a Dog! The perfect pet for a girl with congenital CMV into Japanese. Tomomi Watanabe, a founder of TORCH Association Japan, was given my book by Dr. Naoki Inoue in 2008 after the CMV conference at the CDC.

Watanabe said, "I wanted to get 'Anything but a dog'  published in Japan so more Japanese people would know about children with congenital infections and their families. Although we live far away across the Pacific, I believe we Japanese mothers feel the same way as American mothers do. We are like-minded in our mission, love our children, and regret that our lack of knowledge about CMV led to the disabilities of our children. Now, we wish to save unborn lives and help children with congenital infections and their families because helping others is one way to overcome our sad experiences.  I believe Lisa’s book will make people agree that we have to do something for future children to protect them from congenital CMV." 

Translator Sayaka Nakai said popular and well-known OB-GYNs, pediatricians, and experts in infectious diseases helped raised funds to publish the book, expected to be released January 2017. Nakai said, “Doctors have promised us they will put the book in their waiting rooms. Mothers have promised us that they will donate extra copies to school libraries.” Click here for more information. 
Copyright © 2016 Lisa Saunders, Writer, All rights reserved.


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