June-CMV Awareness Month. Had I known #1 birth defects virus...

June was designated National CMV Awareness Month by the Senate in 2011 with the recommendation that "more effort be taken to counsel women of childbearing age of the effect this virus can have on their children." The Centers for Disease Control and Prevention (CDC) observes the June National Cytomegalovirus (CMV) Awareness Month by featuring educational resources on "the most common infectious cause of birth defects in the United States."

Despite the CDC's efforts, however, most women never hear about CMV until it's too late. Mothers, caregivers and teachers of toddlers are at higher risk for contracting CMV because the young children in their care may be excreting CMV in their saliva and urine.

Although I was at high risk for contracting CMV during my pregnancy because I had a toddler, was a licensed in-home childcare provider and was a church nursery volunteer, I was never told about it. A New York Times article shed some light on why women aren't routinely educated about CMV. The American College of Obstetricians and Gynecologists (ACOG), feel "there is no point in worrying expecting women about the virus... Guidelines from ACOG suggest that pregnant women will find CMV prevention “impractical and burdensome,” especially if they are told not to kiss their toddlers on the mouth — a possible route of transmission."(Saint Louis, 2016).

My daughter Elizabeth was born with a severely damaged brain in 1989 because I contracted CVM, probably early in my pregnancy. Elizabeth died at age 16 in 2006 during a seizure. I have been trying for over 30 years, along with other families affected by CMV, to shout CMV prevention from the rooftops.

It is an "inconvenient truth" that moms need to refrain from kissing their toddlers on the mouth and take extra time cleaning hands and surfaces properly (not trying to save time with diaper wipes), but it's worth it.

According to the CDC, CMV "is a common virus that infects people of all ages. Over half of adults have been infected with CMV by age 40. Most people infected with CMV show no signs or symptoms. When a baby is born with cytomegalovirus (CMV) infection, it is called congenital CMV. About one out of every 200 babies is born with congenital CMV infection. About one in five babies with congenital CMV infection will have long-term health problems" (cdc.gov/cmv). These health problems include hearing loss, intellectual disability, vision loss, seizures, and lack of coordination or weakness.

The American College of Obstetricians and Gynecologists states, "CMV can be spread by contact with an infected child’s urine or other body fluids. Pregnant women who work with young children, such as day care workers or health care workers, should take steps to prevent infection, including wearing gloves when changing diapers. Frequent handwashing also is recommended. Pregnant women with young children at home also are at risk and should take these steps"(acog.org).

“Approximately 1-4% of all pregnant women will experience a primary CMV infection during their pregnancy. If you work in a child care setting, the risk increases to approximately 10%. If you have a toddler at home who is actively infected with CMV and shedding CMV in their saliva or urine, the risk is even higher, approaching 50% in some studies” (Gail J. Demmler-Harrison, MD, “CMV In Pregnancy: What Should I Know?,” 2014).

When I lived in Connecticut, I helped get a CMV law passed in 2015 to combat the virus. Since moving to New York in 2019, I have been trying to educate residents about CMV prevention by sharing these tips from the CDC: "You may be able to lessen your risk of getting CMV by reducing contact with saliva and urine from babies and young children. The saliva and urine of children with CMV have high amounts of the virus. You can avoid getting a child’s saliva in your mouth by, for example, not sharing food, utensils, or cups with a child. Also, you should wash your hands after changing diapers" (cdc.gov/cmv). Other prevention tips include washing hands after picking up toys (nationalcmv.org).

Because CMV prevention is not part of a doctor's "standard of care," it's been left up to families affected by CMV, and the doctors who care for them, to raise awareness by urging legislators to pass CMV education and testing laws, and by attracting media attention. Now that I live along the Erie Canalway National Heritage Corridor, where the Women's Rights movement was launched in 1848 in Seneca Falls with the signing of the "Declaration of Sentiments," it occurred to me this region can also be where the Women's CMV Rights movement is launched. With that in mind, I am walking the 360-mile Erie Canalway Trail with my husband Jim, a recently retired Pfizer scientist, and asking the public, through images of Stop CMV hands and rocks along to the Trail, the "Declaration of Women's CMV Rights and Sentiments" written from my home in Baldwinsville, NY, on the active Erie Canal near Lock 24 .

Inspired by the Women's Rights Declaration of Sentiments of 1848, the "Declaration of Women's CMV Rights and Sentiments" of 2021 begins, "We, the undersigned, hold these truths to be self-evident; that women are created with certain inalienable rights; that among these are life, liberty, the pursuit of happiness, and the right "to enjoy the highest attainable standard of physical and mental health" (Amnesty International), and the right to protect their pregnancies from infections and all other known causes of preventable birth defects. We believe women have the right to be educated about CMV (cytomegalovirus), the leading viral cause of birth defects, and how to reduce their chances of contracting it before and during their pregnancies."

In 2000, Congress established the Erie Canalway National Heritage Corridor because it was “instrumental in the establishment of strong political and cultural ties between New England, upstate New York and the old Northwest and facilitated the movement of ideas and people ensuring that social reforms like...the women’s rights movement spread across upstate New York to the rest of the country...”

I am hoping that this effort to raise CMV awareness from the Erie Canalway National Heritage Corridor will take off--that the woman's right to be educated about CMV will "spread across upstate New York to the rest of the country...”

The "Declaration of Women's CMV Rights and Sentiments" is signed by families affected by CMV from across the country. I will read it publicly for the first time in the Erie Canal town of Lyons on Saturday, June 5, 2021, at an event held on the Trail of Hope in honor of National CMV Awareness Month and National Trails Day. Families affected by CMV will place 226 silver-painted stones on the trail to honor the average number of New York newborns disabled by congenital CMV each year.

CALLS TO ACTION

Please help protect the unborn children in your community by considering the following acts:

1) Share with friends, family and social media the CDC's educational CMV materials, such as the flyer, “CMV Fact Sheet for Pregnant Women and Parents," available in English and Spanish (www.cdc.gov/cmv). For English pdf: cdc.gov/cmv/downloads/cmv-parents-fact-sheet-508.pdf.

2) If you agree with the "Declaration of Women's CMV Rights and Sentiments" document, then sign in comments (and share) at: https://congenitalcmv.blogspot.com/2021/03/womens-cmv-rights-women-have-right-to.html

3) Share this public service music video on social media and use it for presentations: "Had I Known (about CMV)"

4) Join the National CMV Foundation's "Stop CMV Hands Campaign" by photographing your "Stop CMV" hands under your hometown street or state trail signs so legislators can see where you live. Share these photographs with your legislators, asking them to improve CMV prevention education through their Public Health Departments. Share your Stop CMV hand photos on your social media with hashtag, #StopCMV.

5) If you find a #StopCMV rock on the Trail, the painter of some of those rocks (with a silver ribbon, the official color of CMV Awareness), Tabitha Rodenhaus of Kenmore (near Buffalo), states on the back of the rocks: "Please help us raise awareness by posting a pic of this rock on social media using #StopCMV. Thank you. Kaia's Mom."

6) On June 5, 2021, 1pm, to honor National CMV Awareness Month and National Trails Day, the public is invited to join family and friends of those affected by CMV at the Trail of Hope in the Erie Canal town of Lyons at the Lyons Community Center. The Declaration of Women's CMV Rights and Sentiments will be read aloud and 226 stones placed on the trail to honor the average number of New York newborns disabled by congenital CMV each year.

7) My New York senator just filed a CMV education bill aimed at child care providers! Senate Bill S6287 is being named "Elizabeth's law" in memory of our daughter. The bill requires that child care providers "be trained on the impacts and dangers of congenital cytomegalovirus infection and the treatments and methods of prevention of cytomegalovirus infection."

For those of you who have a moment and live in New York, here are three pretty simple ways to choose from to help get the "Elizabeth's law" passed:

A) Share my Facebook announcement about it: https://www.facebook.com/504336809953884/posts/1631179840602903/?d=n

B) Click on Senate Bill S6287 at: https://www.nysenate.gov/legislation/bills/2021/s6287, create an account with the New York State Senate, then look to the right of the bill page, and click on "Aye" under "DO YOU SUPPORT THIS BILL." When you set up an account, it will have your address and make sure your senator knows you support the bill.

And/or

C) Contact your senator(found at: https://www.nysenate.gov/find-my-senator) and ask them to support Senate Bill S6287 so child care providers can be educated about their occupational risk for cytomegalovirus (CMV) and how to prevent it.