How you can help protect unborn children from CMV:
1. Write a letter to the editor of your local papers and magazines (they like to publish letters by their readers). If you're really ambitious, try writing the national media as well. Change the following sample letter to the editor to relect your story and contact information:
[Your address and contact info]
Did you know that when a pregnant woman kisses a young child on the cheek, she is risking mental retardation and hearing loss for her unborn child? That daycare workers are also putting their unborn children at risk? Most people don't, and when I was pregnant with my [child's name], I didn't know either.
Potentially thousands of children a year could be spared life-threatening disabilities if pregnant women were simply warned to avoid the bodily fluids of young children. According to the Centers for Disease Control and Prevention (CDC), 1 in 750 babies are permanently disabled by congenital CMV. CMV is more common than Down syndrome and is the leading viral cause of mental retardation and hearing loss.
[mention how you are personally affected by CMV or are upset that you know of women of child bearing age who have never heard of it]
According to Drs. Cannon (of the CDC) and Davis in their article, "Washing Our Hands Of The Congenital Cytomegalovirus Disease Epidemic,” “Perhaps no single cause of birth defects and developmental disabilities in the United States currently provides greater opportunity for improved outcomes in more children than congenital CMV. Given the present state of knowledge, women deserve to be informed about how they can reduce their risk of CMV infection during pregnancy...by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic…The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV.” See www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379 Drs. Cannon and Davis believe that ob-gyns do not routinely warn their patients of the disease because they don't realize how prevalent it is--many are not born with the obvious symptoms--hearing loss and developmental delays may not be obvious at birth. To learn more about CMV, see the brochure found on the CDC Web site http://www.cdc.gov/cmv/
The CDC recommends that pregnant women avoid kissing young children on the mouth or cheek, sharing food, towels or utensils with them, and frequently washing their hands—especially after diaper changes (rubber gloves are not enough). The CMV Registry adds that toys must be washed with disinfectant.
To see a short story published about one child who suffered and died as a result of congenital CMV, visit: recordonline.com - The silent virus that silenced Elizabeth [or put a link to your own child's story]. Thank you for your consideration.
[your name and contact information again]
Other ways to raise awareness:
1.Print out the brochure found on the CDC Web site and ask your doctors to post it in their waiting rooms. See Brochure on CMV - In English - en Español (In Spanish)
2. Donate to an organization that supports CMV research, disseminates information and provides a parent support group, contact the National Congenital CMV Disease Registry at (832) 824-4387 or visit www.bcm.edu/pedi/infect/cmv. If you would like to make a tax deductible donation to them, please make checks payable to CMV Research Fund.
3) Contact some of the following groups with CMV information. Perhaps they'll post in their newsletter/magazine and Web sites. Ask them to put CMV on the list that pregnant women should avoid. Ask them to tell doctors to warn pregnant women about CMV and how they can avoid it. Remind them it is the leading viral cause of mental retardation and hearing loss.
American College of Obstetricians and Gynecologists, www.acog.org409 12th St., S.W., PO Box 96920Washington, D.C. 20090-6920(202) 638-5577
March of Dimes, (914) 997-4488, www.marchofDimes.com
1275 Mamaroneck AvenueWhite Plains, NY 10605
MOPS, Mothers of Preschoolers. http://www.mops.org/
Search out other Internet groups that reach women of child-bearing age
4)Get on shows like "Montel Williams"
5)Write letters to representatives in Congress.
6)Take a leadership role in organizing parent groups. The Baylor parent group is the place to start.
7) Lobby organizations like the March of Dimes to encourage them to pay more attention and give more effort toward congenital CMV.
8)Join the CMV Foundation mailing list
Marti Perhach email@example.com, whose daugther Rose was stillborn as a result of Group B Strep infection, has given me many ideas such as: "Starting your own health observance month just for CMV (I’m not sure if you can do that as an individual) on the National Health Observance Calendar is the best free promotion. http://www.healthfinder.gov/library/nho/ . This page on the Jesse Cause website http://www.thejessecause.org/pages/awareness.html has some ideas. As to the Health Observance Calendar, you would need to have a website for them to refer to or materials to mail or that they can download. October is Pregnancy and Infant Loss Awareness Month in case that is a promotional tool you can use. It is not on the Health Obs. Calendar but is recognized by Compassionate Friends and the SIDS alliance. You can also start pregnancy board threads or contact women’s health websites. I sent the CMV info to a South African website where the moms are promoting Prenatal Infection month with us.
The CDC is putting together a website section and materials on prenatal infections that should be ready in the next few months. The American College of Nurses and Midwives were very receptive. Can you partner with the company that manufactures the CMV test to help get out the information? Ideally I would like to have a brochure in both the prenatal and postnatal gift bags that moms get although that’s a very expensive project—hopefully someday soon! I don’t know of any publishers unless you got a sponsor like Lysol (they sponsored a poster on the CDC website) or a medical company that does patient information (can’t think of any right now but there’s always literature at the doctors’/pharmacy.)Doctors need CME credits so maybe you could get a company to sponsor a lecture on CMV info and the doctor gets their continuing education credit.
Marti's group: ~Group B Strep International~ Group B Strep International was formed in April 2006 by John MacDonald and Marti Perhach who each lost a daughter to Group B strep (GBS). ...www.groupbstrepinternational.org/about.html