Perhaps you can help raise awareness of the leading birth defect virus, congenital cytomegalovirus (CMV) now that the country is finally learning that CMV is much more widespread than Zika thanks to last Tuesday's New York Times article, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed." The article includes mention of the CMV bill I helped get passed in Connecticut (to see what this law means to the medical community, see the Clinical Advisor article at: http://www.clinicaladvisor.
The prevention education part of the Connecticut bill didn't pass, however, because it would have required funds, so I still rely on nurses and the media to get the message out there--especially now that American College of Obstetricians and Gynecologists (ACOG) has reversed it's decision to instruct their pregnant patients on prevention (you can read about that in the NY Times article).
When I contacted the CDC in July 2016 to ask why they took down CMV prevention tips such as pregnant mothers refraining from kissing their toddlers around the mouth or sharing utensils with them, I received a response in August 2016 stating, "The prevention recommendations currently on the CDC website are consistent with 2015 guidelines from the American College of Obstetricians and Gynecologists (ACOG) and the American Academy of Pediatrics." ACOG's position on CMV instruction, recently revised in 2015, is now that their patients will consider such guidelines difficult to implement because "they often are considered impractical or burdensome." (see page 1514 of the ACOG Practice Bulletin (June 2015), [151 Cytomegalovirus, Parvovirus B19, Varicella Zoster, and Toxoplasmosis in Pregnancy (June 2015])
If ACOG won't promote CMV prevention education, can you help?
According to the Centers for Disease Control and Prevention (CDC), “About one out of every 150 babies are born with congenital [present at birth] CMV infection (http://www.cdc.gov/cmv/congen
As a former licensed day care provider in Maryland, I was never warned that caring for young children put my pregnancy at risk and my daughter Elizabeth was born severely disabled by congenital CMV (she had the small head seen with Zika babies). Shortly after moving to Connecticut in 2010, I received a call from a local grandmother who said her grandson was just born disabled by congenital CMV. The baby's mother had been a college student interning at a Connecticut day care center while pregnant. She, too, had not been educated about CMV and how to protect her pregnancy. When I visited the mother and baby in the hospital, the attending nurse asked me why more wasn’t being done to raise awareness of this leading viral cause of birth defects. (I do what I can by writing and lecturing on the topic, including at a conference held at the Infection Control Nurses of Connecticut in April 2013, reference: Kris Magnussen, KMagnussen@llhd.org.)
I just compiled the list, "What are the 13 things childcare workers need to know or do about CMV?" and give links to the sources on my CMV blog at: Former Childcare Provider Lists 13 Things You Should Know/Do About CMV--Much More Widespread Than Zika
I will be interviewing a pediatrician on my local access TV show next week about how we can all work together to raise a CMV prevention message. I would be happy to send you the link once it's uploaded to my YouTube channel if you write to me at LisaSaunders42@gmail.com
Thankfully, as a result of the CT CMV bill passing, the CT Department of Health has updated its website to include CMV prevention at:http://www.ct.gov/dph/cwp/v
My daughter's life with congenital CMV is shown through images in the short, three-minute video below. My friend, Debra Lynn Alt, the former lead singer for the Rolling Stone magazine band, allowed me to set the slideshow to a song she wrote and performed for a boy with autism.
Thank you for your time.
Sincerely,
Lisa Saunders, author/speaker
Parent Representative, Congenital Cytomegalovirus Foundation
845-222-8593 | LisaSaunders42@gmail.com | http://congenitalcmv.org/ | www.authorlisasaunders.com | PO Box 389, Mystic, CT 06355 | Lisa is author of ANYTHING BUT A DOG! The perfect pet for a girl with congenital CMV (cytomegalovirus).
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