I'm the parent representative for the Congenital Cytomegalovirus Foundation, whose mission is to prevent birth defects resulting from congenital CMV infection. My bio, along with some of the country's leading congenital CMV experts, can be found here: http://www.congenitalcmv.org/foundation.htm
In summary, according to the CDC:
Few women have heard of congenital CMV (cytomegalovirus) and more than half of OB/GYNs surveyed admitted they don't warn their patients about it.
According to 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
The CDC makes the following recommendations on simple steps you can take to avoid exposure to saliva and urine that might contain CMV:
Wash your hands often with soap and water for 15-20 seconds, especially after
·changing diapers
·feeding a young child
·wiping a young child’s nose or drool
·handling children’s toys
In Addition:
·Do not share food, drinks, or eating utensils used by young children
·Do not put a child’s pacifier in your mouth
·Do not share a toothbrush with a young child
·Avoid contact with saliva when kissing a child
·Clean toys, countertops, and other surfaces that come into contact with children’s urine or saliva
I am particularly concerned about the lack of information on CMV prevention at daycare centers because toddlers are the majority of the carriers. Most people cannot tell these toddles are infected because CMV is often a "silent virus" with no symptoms. I met Dr. Adler at the 2012 International CMV conference in San Francisco where I learned he is one of the co-authors of the paper, "Cytomegalovirus as an occupational risk in daycare educators," found at:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2528629/
I ran a liscenced daycare in my home when I was pregnant with my daughter Elizabeth having no idea the precautions I should have taken (not kissing my own toddler around the mouth or sharing cookies with her because since she, too, was in my daycare center, she would likely become infected). I recently visted a young mother and her baby born with congenital CMV. She too worked in a daycare center having no idea of the precautions to take.
If you have any advice on how parents and workers associated with daycare centers can learn the precautions to take, please contact me directly at saundersbooks@aol.com As of now, I have contacted the Groton, Connecticut, health department to see what I can do.
Resources:
Congenital Cytomegalovirus Foundation--mission is to prevent birth defects resulting from congenital CMV infection. http://www.congenitalcmv.org
The National Congenital CMV Registry: The National Congenital CMV Disease Registry and Research Program in Houston, Texas, includes members from many disciplines and specialties who conduct clinical and laboratory research studies on congenital CMV disease, including ways to better define and promote awareness of the public health problem, the long term effects, and the treatment and prevention of congenital CMV disease. Visit them at: www.bcm.edu/pedi/infect/cmv
Stop CMV -The CMV Action Network:
The mission of Stop CMV - The CMV Action Network is to prevent and eliminate congenital CMV and to improve the lives of all people affected by congenital CMV. Since 2003, Stop CMV has been fostering congenital CMV awareness via internet and public awareness campaigns. The CMV Action Network is comprised of families, friends and medical professionals personally affected by CMV and committed to public education efforts to prevent future cases of the virus. Since its non-profit incorporation in 2009, Stop CMV has grown to become the world's largest CMV organization. Visit them at: www.StopCMV.org
Congenital CMV Blog: http://congenitalcmv.blogspot.com
The author of this book, Lisa Saunders, maintains a congenital CMV blog and links to parent and media resources. Lisa’s daughter Elizabeth was born severely affected by congenital CMV and died at the age of 16. Lisa is the author of the memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV, and is available for speaking engagements. Contact her for her availability at saundersbooks@aol.com
