I didn’t know how to prevent congenital CMV, which causes more disabilities than Down syndrome, until it was too late for my daughter Elizabeth born severely mentally and physically disabled by the disease.
According to the CDC (www.cdc.gov/cmv):
• Congenital CMV causes one child to become disabled every hour.
• About 1 in 150 children is born with congenital CMV infection (approximately 30,000). CDC’s flyer of congenital CMV prevention tips: http://congenitalcmv.org/CDCbrochure.pdf
Elizabeth died at age 16 in 2006 during a seizure. I am the author of Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus). See: http://www.amazon.com/dp/1588329968/?tag=mh0b-20&hvadid=3521606113&ref=pd_sl_2m2y0nosos_p
I am also the parent representative for Congenital Cytomegalovirus Foundation (http://congenitalcmv.org/) and work with Connecticut's Brenda K. Balch, MD, American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion to raise CMV awareness. Balch has a strong interest in preventing congenital CMV as it is the most common cause of nonhereditary sensorineural hearing loss in childhood. Balch said, “We must commit to educating the public about cytomegalovirus so that we can potentially prevent the devastating consequences of this disease on our children."
I have prepared a one-page fact sheet with answers to most frequently asked questions. See: https://drive.google.com/file/d/0B9Klfxar2CmjU1ZLRUc2VlFNbEE/view?usp=sharing
To learn more, please see my following press release:
IMMEDIATE RELEASE
Lisa Saunders, Parent Representative
Congenital Cytomegalovirus Foundation
PO Box 389
PO Box 389
Mystic, CT 06355
Over 5,000 Babies Disabled Every Year by Preventable Virus
Congenital Cytomegalovirus Causes More Disabilities Than Down Syndrome
Mystic, Conn.— Lisa Saunders didn’t know how to prevent contracting cytomegalovirus (CMV), which causes more disabilities than Down syndrome, until it was too late for her daughter born severely mentally and physically disabled by the disease. Women of child-bearing age are still not routinely advised on CMV’s prevalence and how to avoid it. Since 2013, only the State of Utah requires its health department to educate the public about congenital CMV.
According to the Centers for Disease Control and Prevention (CDC):
• Congenital CMV causes one child to become disabled every hour.
• About 1 in 150 children is born with congenital CMV infection (approximately 30,000).
• About 1 in 750 children in the United States is born with or develops permanent problems due to congenital CMV infection.
• In the United States, more than 5,000 children each year suffer permanent problems caused by CMV infection.
See the CDC’s flyer of congenital CMV prevention tips: http://congenitalcmv.org/CDCbrochure.pdf
Saunders, author of Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus), said, “My OB/GYNs didn’t tell me how to prevent congenital CMV until after my daughter was born. Then I received literature stating women who work in daycare, or have a young child in daycare, are at a higher risk for catching it as toddlers are the majority of carriers. While I was pregnant with Elizabeth, I had a toddler plus ran a licensed daycare center. Nowhere in the licensing literature was there a CMV prevention message. In milder cases, children may lose hearing or struggle with learning. But Elizabeth's case was not a mild one.” Elizabeth died at age 16 in 2006 during a seizure.
Both residing in Mystic, Saunders, the parent representative for Congenital Cytomegalovirus Foundation, and Brenda K. Balch, MD, American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion, sought passage of a bill similar to Utah’s in 2014. Balch has a strong interest in preventing congenital CMV as it is the most common cause of nonhereditary sensorineural hearing loss in childhood. Balch said, “We must commit to educating the public about cytomegalovirus so that we can potentially prevent the devastating consequences of this disease on our children."
In 2014, the Conn. Senate failed to vote on the bill before the end of the session despite “Letters of Testimony” from mothers whose babies were disabled by the preventable disease and Yale University’s Eugene D. Shapiro, M.D., Professor of Pediatrics, Epidemiology and Investigative Medicine.
Saunders has prepared a one-page fact sheet with answers to most frequently asked questions. See: https://drive.google.com/file/d/0B9Klfxar2CmjU1ZLRUc2VlFNbEE/view?usp=sharing
Beginning in January 2015, Saunders and Balch are once again asking Connecticut residents to call or write to members of the Public Health Committee plus their own legislators to ask them to support H.B. 5525, which seeks to prevent the 50 babies born disabled by congenital CMV in Connecticut each year.
For more information about congenital cytomegalovirus, visit the Centers for Disease Control and Prevention (CDC) at www.cdc.gov/cmv or write to Lisa Saunders at LisaSaunders42@gmail.com or Dr. Brenda Balch at bkbalch@sbcglobal.net.
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The Congenital Cytomegalovirus (CMV) Foundation raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine.
Founder: Lenore Pereira, Ph.D., Professor, Cell and Tissue Biology Department, University of California San Francisco. Contact her at: lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org. Parent organization for the Congenital CMV Foundation:
Public Health Foundation Enterprises, Inc.
a 501(c)3 corporation
12801 Crossroads Parkway S. #200
