NY Proclaims June CMV Awareness Month: Stop #1 Birth Defect Virus

June is National Cytomegalovirus (CMV) Awareness Month and June 2021 was proclaimed as Cytomegalovirus Awareness Month in the State of New York, stating, "It is imperative that women are educated about the virus itself and simple preventative measures, such as not sharing food with toddlers, and washing one's hands after changing infants and toddlers diapers..."

In 2018, New York passed Senate Bill S2816, which requires "testing for cytomegalovirus of newborns with hearing impairments," but more work needs to be done to prevent cytomegalovirus (CMV), the leading viral cause of birth defects.

In 2021, new bills were filed to ensure women receive CMV prevention education. Senate Bill S6287A was passed by the Senate, while the same bill, Assembly Bill A7560, is still in Committee (Assembly Children And Families). The Bill "Establishes 'Elizabeth's law'; requires child care providers to be trained on the impacts and dangers of congenital cytomegalovirus infection and the treatments and methods of prevention of cytomegalovirus infection; requires distribution of materials relating to cytomegalovirus by certain physicians."

About CMV: “This is a very common virus, but it remains somewhat under the radar. A woman can unknowingly acquire it during pregnancy, and pass the infection to the unborn baby,” states Sunil K. Sood, M.D., Chair of Pediatrics, South Shore University Hospital, Attending Physician, Infectious Diseases, Cohen Children's Medical Center and Professor, Zucker School of Medicine at Hofstra/Northwell. "CMV is spread from person to person through body fluids. Day care workers, nurses, mothers of young children, and others who work with young children are at greatest risk of exposure to CMV. Since young children commonly carry CMV, pregnant women and women planning pregnancies should take extra care to avoid urine and saliva from young children.” (“Could CMV Be the Cause of My Baby's Failed Hearing Test?”, NYMetroParents, 2016)

On Saturday, June 5, Trail Works, Inc. celebrated National Trails Day by raising awareness of cytomegalovirus (CMV) at the Trail of Hope in the Erie Canal Town of Lyons. The June 2021 Cytomegalovirus Awareness Month proclamation was read aloud by one of its co-sponsors, Assemblyman Brian Manktelow. Lisa Saunders of Baldwinsville, the mother of Elizabeth (1989-2006) born with a severely damaged brain from congenital CMV, followed with a reading from the "Declaration of Women's CMV Rights and Sentiments," a document inspired by the Women's Rights "Declaration of Sentiments" launched in Seneca Falls. Lisa's reading began, "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 protect their pregnancies from infections and all other known causes of preventable birth defects..."

The readings concluded with the placement of over 220 rocks painted silver, the official color of CMV awareness, to honor the number of babies born disabled by congenital CMV in New York each year. Participants watched while listening to "Had I Known (about CMV)" by Debra Lynn Alt.

Boces students from Career Creations painted more than 100 of these rocks and Kristin Schuster of Canandaigua, mother of Autumn born in 2015 with congenital CMV, painted 110 rocks with the help of her children. Per requests from families unable to attend, Kristin wrote the names of 70 children born with disabilities from CMV on the rocks. Kristin's husband, Kregg, attended to their two younger children while daughter Autumn helped Kristin and Lisa, along with her husband Jim, place the silver rocks within a heart-shaped border. Kris and Jessica Keukelaar of Macedon were in attendance with their children, including their firstborn Kyleigh, born with congenital CMV in 2018. Like Lisa, both Kristin and Jessica worked professionally with young children during pregnancy with their daughters born with congenital CMV. Some rocks placed in the garden bear a silver awareness ribbon and "#STOPCMV". Those were painted by Tabitha Rodenhaus of Kenmore, mother of Kaia born with congenital CMV. The back of her rocks read: "Please help us raise awareness by posting a pic of this rock on social media using #StopCMV. Thank you Kaia's Mom." Lisa and others are placing these #STOPCMV rocks along the Erie Canalway Trail.

"It was great to celebrate National Trails Day at the Trail of Hope with families affected by CMV," said Mark De Cracker, manager of the Trail of Hope and founder of Forever Wild For Everyone. The Trail of Hope is a Forever Wild for Everyone trail recognized by the Erie Canalway National Heritage Corridor in 2013 with a Heritage Award of Excellence. "The purpose behind creating the Trail was to provide an accessibility trail so everyone can enjoy the beauty of nature. Many find the Trail of Hope healing, and one woman even called it 'God's garden.'"

Families affected by CMV are hoping that New York assemblymembers will co-sponsor and pass Assembly Bill A7560, named in memory of Lisa and Jim Saunders' daughter, Elizabeth. Lisa hopes that by reading aloud her "Declaration of Women's CMV Rights and Sentiments" along the Erie Canalway National Heritage Corridor on June 5 in Lyons that it could launch a "CMV rights" movement and be embraced in every part of the country as was the Women's Rights movement, also launched along the Erie Canalway National Heritage Corridor in Seneca Falls in 1848. 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..."

Lisa and her husband Jim will continue to raise CMV awareness by completing the Erie Canalway Challenge. They plan to walk the 360 miles between Albany and Buffalo and have completed 50 miles to date (media coverage of their walk found below).

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More information:

CMV by the Numbers:

It is estimated that in New York alone, 222 babies are permanently disabled by congenital CMV EACH YEAR. That figure was calculated using estimates from the Centers for Disease Control and Prevention (CDC):

1) In the U.S., about 1 in every 200 babies is born with a cCMV infection. Of these babies, around 1 in 5 will have long-term health problems.(www.cdc.gov/cmv/index.html).

2) In 2019, 3,747,540 babies were born in the U.S. Therefore, an estimated 18,738 babies were born with congenital CMV and 3,748 babies had some disability caused by cCMV in the U.S.

3) In New York, in 2019, 221,539 babies were born. Therefore, an estimated 1,108 babies were born with congenital CMV, with 222 babies being born permanently disabled by congenital CMV.

IF CMV WAS A PROBLEM, WOULDN’T MY DOCTOR TELL ME?

Six Possible Reasons Women Are Unaware of CMV

1) CMV prevention education is not "part of standard prenatal care” (Washington Post, "How a common, often harmless virus called cytomegalovirus can damage a fetus," May 15, 2021.)

2) Doctors don’t want to frighten, worry or “burden” patients. New York Times: "The American College of Obstetricians and Gynecologists [ACOG] used to encourage counseling for pregnant women on how to avoid CMV. But [ in 2015], the college reversed course...Some experts argue that because there is no vaccine or proven treatment, 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).

3) Low media coverage. In the HealthNewsReview.org article, "Why does CMV get so much less news coverage than Zika — despite causing far more birth defects?" the author states, “Researchers we spoke with identified the same factors – fear and the epidemic/endemic nature of the diseases – as driving the media disparity” (Shipman, 2018).

4) Although U.S. workers have the right to “receive information and training about hazards” (Occupational Safety and Health Act of 1970), there are no federal laws governing CMV education policies for child care workers. The Department of Labor states, "Education and training requirements vary by setting, state, and employer."

5)"The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed” (Cannon and Davis, 2005).

6) Medical training downplays the dangers. Pediatrician Megan Pesch, M.D., of the University of Michigan’s C.S. Mott Children’s Hospital, whose third daughter was born with congenital CMV and a progressive hearing loss, said, "I went back and looked at my notes at what I’d learned in residency and medical school, and what we learned was so rudimentary and basic...I waver between feeling guilty and feeling furious. I have spent — how many years of my life in developmental pediatrics? — how could I not have known?”(Washington Post, "How a common, often harmless virus called cytomegalovirus can damage a fetus," May 15, 2021.)

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Stories from other New York CMV Families

Angela Cote of Buffalo appreciates the 2018 New York CMV testing law because it diagnosed why her daughter Elise failed her hearing test, giving her options for early intervention. But Angela wishes she had known about CMV and how to prevent it before her pregnancy with Elise--especially since Angela had an occupational risk for it. She said, "Not once have I ever heard of CMV or was told about CMV. I was a nanny so I was around children a lot as well as having my daughter, who was a toddler at the time I became pregnant with Elise. Not my OB or any other doctor mentioned or screened me for CMV to see if I had been exposed in the past."

Brandi Hurtubise, also from Buffalo, supports "Elizabeth's Law." Her second child Samantha was born with congenital CMV. Brandi told her story to the National CMV Foundation: "No one told me I shouldn't share drinks or food with my toddler while I was pregnant with [Samantha]. Or that I needed to wash my hands after every single diaper change. That I needed to be cautious of his saliva and urine because it could be carrying a virus that would harm my unborn baby. I didn't know because CMV isn't commonly talked about or educated on; even though it is incredibly common."

I interviewed both Angela and Brandi on PAC-B TV: "Did You Know? - CytoMegaloVirus (CMV) - What Moms Wished They Knew" (May 7, 2021).

My CMV work has been covered in several media outlets:

1. Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV" by STEVE BUCHIERE, (June 4, 2021).
2. The Citizen: "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness," by Robert Harding (June 2, 2121).
3. Syracuse Woman magazine, "Fighting CMV One Step at a Time (p.28)" by Emma Vallelunga (May 2021) (p.29 image of Stop CMV hand, rock and shirt)
4. The Citizen: "'Elizabeth's law,' named for CNY couple's daughter, would boost CMV awareness" by Robert Harding (May 4,2021)
5. The Citizen, "Challenge for Change: Walking across NY to raise awareness of CMV," by David Wilcox (Mar 31, 2021)
6. National CMV Awareness Month: Lisa was featured along with musician, Debra Lynn Alt, and pediatrician Brenda K. Balch, M.D., on News 8's: “Mystic mother raises awareness of CMV, a risk for pregnant women and their babies,”2018)
7. Cornell Alumni Magazine: In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action (2015).
8. Times Herald Record: What every pregnant woman needs to know (2009)

Please protect your pregnancy--#Stop CMV!

Sincerely,

Lisa Saunders

PSA: "Had I known (about CMV)