6/5: CMV Advocates Gather to Raise Awareness. NY Senate passed bill to protect pregnancies of caregivers, moms from #1 birth defects virus, declares June CMV Awareness Month as did Assembly.

The New York Senate just passed  S6287A named "Elizabeth's Law"  in memory of my daughter, and the Assembly proclaimed June 2021 as Cytomegalovirus [CMV] Awareness Month, stating it is "Imperative that women are educated about the virus itself and simple preventative measures, such as not sharing food with toddlers..."  June is also National CMV Awareness Month. 

In an effort to commemorate June as CMV Awareness Month, Trail Works of Wayne County has offered its "Trail of Hope" to share prevention education on the leading viral cause of birth defects while celebrating National Trails Day on Saturday, June 5, 1pm.

Please see the following press release for more information. 

While you are reading, you may wish to listen to the song,  "Had I Known (about CMV)" by Debra Lynn Alt and/or watch the PSA. I have cced Debra in case you would like to use it (at no cost) during National CMV Awareness Month as was done in 2018 on Connecticut's News 8's: “Mystic mother raises awareness of CMV, a risk for pregnant women and their babies.”

Sincerely,

Lisa Saunders

Baldwinsville, NY 13027

LisaSaunders42@gmail.com

IMMEDIATE RELEASE

New York Senate Passes Bill to Mandate Prenatal Education For 

Highly Debilitating Congenital Cytomegalovirus (CMV)

June 2021 proclaimed  Cytomegalovirus  Awareness Month: "Imperative that women are educated about the virus itself and simple preventative measures, such as not sharing food with toddlers..."

  New York and National CMV Awareness Month Celebrated on National Trails Day (June 5)  

Albany, New York--The State of New York is raising awareness of the leading viral cause of birth defects, congenital cytomegalovirus (CMV) by declaring June Cytomegalovirus Awareness Month and the Senate just Bill S6287A: SUMMARY: "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." The Assembly still needs to pass their version, A7560. (More on S6287A passed in the Senate: "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness," Auburn Citizen, June 2, 2121).

"Elizabeth's Law" was named in memory of Elizabeth Saunders, born to  Lisa Saunders, a former child care provider, and James P. Saunders, now a retired Pfizer scientist currently living in Baldwinsville in upstate New York. Elizabeth was born in 1989 with a severely damaged brain because Lisa caught CMV just before or during pregnancy. Elizabeth died at 16 during a seizure in 2006. In 2018, while the couple was living in Mystic, Connecticut, they helped Connecticut pass a CMV testing law for newborns who fail their hearing test. (Cornell Alumni Magazine: In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action, 2015).

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)

Saturday, June 5, 1pm:  In an effort to commemorate June as CMV Awareness Month, Trail Works of Wayne County has offered its "Trail of Hope" to share prevention education on the leading viral cause of birth defects while celebrating National Trails Day. Mark De Cracker of Trail Works of Wayne County said, "The public is invited to a special recognition of the benefits of an accessibility trail at the Trail of Hope. After touring the 1/4-mile long trail, which includes a yellow brick road and over 10,000 flowers, join the ceremony at the Ribbon of Hope rock area that will include a public reading of 'Declaration of Women's CMV Rights and Sentiments,' followed by the placement of 222 rocks painted silver to honor the number of newborns disabled by congenital CMV in New York each year." Park in the Lyons Community Center parking lot where you will see the entrance to the Trail of Hope and  gardens." More information: www.trailworks.org or call Mark DeCracker at (315) 573-8170 or see Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV" by STEVE BUCHIERE, June 4, 2021).

Kristin Schuster of Canandaigua plans to attend the Trail of Hope event with her children. Her first child, Autumn, was born with congenital CMV in 2015. Like Lisa, Kristin never heard of CMV or that she was at increased risk for the disease because of her occupation. She said, "I was teaching in a pre-kindergarten inclusion classroom while pregnant with Autumn and was unaware of the dangers of CMV exposure." If a New York family affected by CMV cannot be there on Saturday but would like their child’s name written on a rock, contact Kristin through Lisa's email at  LisaSaunders42@gmail.com with the child's name.

Tabitha Rodenhaus of Buffalo, the mother of a child with congenital CMV, is painting #StopCMV rocks for Lisa to leave along the Erie Canalway Trail to help raise awareness. (More on this effort: The Citizen, "Challenge for Change: Walking across NY to raise awareness of CMV"  and Syracuse Woman magazine, "Fighting CMV One Step at a Time (p.28)".)

CONGENITAL CMV BY THE NUMBERS

Congenital cytomegalovirus (CMV) is the most common infectious cause of birth defects (www.cdc.gov/cmv/awareness-month.html). Approximately 1 in 200 children are born in the U.S. with congenital CMV. Of these babies, around 1 in 5 will have long-term health problems. The impact on the fetus may include deafness, blindness, cerebral palsy, developmental disabilities, seizures and even death (www.cdc.gov/cmv).

• In 2019, 3,747,540 babies were born in the U.S (https://www.cdc.gov/nchs/fastats/state-and-territorial-data.htm). Therefore, an estimated 18,738 babies were born with congenital CMV and 3,748 babies had some disability caused by congenital CMV in the U.S.
• 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.

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Learn more: New York Times article, CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed (2016).

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

MORE INFORMATION:

The Occupational Safety and Health Administration (OSHA) lists CMV as a "Recognized Hazard," yet recent surveys show that most child care providers do not know about CMV and many acknowledge using diaper wipes to clean hands instead of following proper protocols (Thackeray and Magnusson, 2016). Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014). 

The recent Washington Post article, "How a common, often harmless virus called cytomegalovirus can damage a fetus," confirms how the lack of education on CMV is having a devastating effect on our nation's newborns (May 15, 2021). The article includes the following points: 

1) CMV prevention education is not "part of standard prenatal care” 

2) Toddlers, particularly those in daycare with other toddlers, are bringing CMV home to their pregnant mothers who are not told that "women can catch it from their toddlers when then they share food, cups and utensils, change diapers, and even kiss, especially on the lips."

3) Medical training downplays the dangers of CMV. "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?” states Pediatrician Megan Pesch, M.D., of University of Michigan’s C.S. Mott Children’s Hospital, whose third daughter was born with a progressive hearing loss from congenital CMV.

The New York Times article, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed" exposed why women aren't being told about CMV, which, according to Lisa Saunders, is particularly unfair to caregivers/teachers who work professionally with toddlers (Saint Louis, 2016). 

CMV is a viral infection that is common in children. Up to 70% of children ages 1-3 years in group care settings excrete CMV. The New York Health Department website states, "In daycare centers, where hand washing practices may not be as good, there may be a greater risk of infection...Pregnant women working in child care facilities should minimize direct exposure to saliva and avoid kissing babies or young children on the mouth. Hugging is fine and is not a risk factor...." Information is provided in English and Spanish at: https://www.health.ny.gov/diseases/communicable/cytomegalovirus/fact_sheet.htm    

RAISING AWARENESS

• Utah and Idaho have already passed CMV education laws to protect the pregnancies of child care providers. 
• Racial and ethnic minorities are particularly at risk for CMV. "CMV is more common among socially disadvantaged groups, and it clusters geographically in poor communities"(Geographic Disparities in Cytomegalovirus Infection During Pregnancy, Lantos et al, 2017).  
• Efforts by Lisa Saunders to raise CMV awareness can be found in several articles: 

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)

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Need a New York CMV Expert to interview?

Sunil K. Sood, MD, author of “Could CMV Be the Cause of My Baby's Failed Hearing Test?”  (NYMetroParents, 2016).  

Chair of Pediatrics, South Shore University Hospital                                       

Attending Physician, Infectious Diseases, Cohen Children's Medical Center 

Professor, Zucker School of Medicine at Hofstra/Northwell 

ssood@northwell.edu 

301 East Main Street, Bay Shore, NY 11706 

Tel (631) 968-3215 

https://pediatrics.northwell.edu/  

https://southside.northwell.edu/  

Nellie Brown, MS, CIH, Certified Industrial Hygienist, and Director, Workplace Health and Safety Program, Worker Institute, Cornell University – ILR School. njb7@cornell.edu.

1. Publication: Brown, N. J. (2019, November). Occupational exposure to cytomegalovirus (CMV): Preventing exposure in child care and educational settings, including OSHA advisories. Ithaca, NY: Cornell University, ILR School. Available from: https://digitalcommons.ilr.cornell.edu/conference/45/

2. Download video workshop: https://vimeo.com/user43999427/download/450219803/e5b7be27db

This publication/presentation is by Nellie Brown, MS, CIH, Certified Industrial Hygienist, and Director, Workplace Health and Safety Program, Worker Institute, Cornell University – ILR School. The information in this training program was originally developed for The Center for Occupational & Environmental Medicine at the Erie County Medical Center (ECMC), 462 Grider St., Buffalo, NY 14215.  Permission to make this training program available online granted by The Center for Occupational & Environmental Medicine. For further information, or to ask about a Q and A over Zoom, contact Nellie Brown at: njb7@cornell.edu.

New York families have shared their stories about their children born with congenital CMV. Children with their stories published include: 

• Samantha 
• Elise
• Charlotte
• Noah
• Leo
• Chief
• Elizabeth Saunders