Lisa Saunders & Mystic Seafarer's Trail

Lisa Saunders

Author, TV talk show host, and CMV fighter

Elizabeth Saunders born with congenital cytomegalovirus (CMV)

Lisa Saunders Blog


5/25/21

New York Bills Filed to Mandate Prenatal Education For Another "C" Virus--
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..."


Albany, New York--The State of New York is raising awareness of the leading viral cause of birth defects, congenital cytomegalovirus (CMV). Summary of Bills S6287A  (and A7560): "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" (found at: https://www.nysenate.gov/legislation/bills/2021/s6287). 

"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. 

Having retuned to New York in 2019, Lisa was thrilled to learn New York had passed Senate Bill S2816 (authored by Assemblymember Linda B. Rosenthal): "AN ACT to amend the public health law, in relation to the testing of certain newborns for cytomegalovirus and public education thereon ." Lisa contacted Assemblymember Rosenthal hoping she would sponsor a bill requiring more specific and expansive CMV education, particularly to child care providers and mothers of toddlers who are at increased risk. Assemblymember Rosenthal agreed to sponsor the Assembly Bill while Senator John W. Mannion is sponsoring the Senate Bill. (The Citizen: "'Elizabeth's law,' named for CNY couple's daughter, would boost CMV awareness" by Robert Harding, May 4,2021.)


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)


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).


Kristin Schuster of Canandaigua is the mother of Autumn, born with congenital CMV in 2015. Autumn is her first child. Kristin said, "I was teaching in a pre-kindergarten inclusion classroom while pregnant with Autumn and was unaware of the dangers of CMV exposure."

June 2021 was proclaimed  Cytomegalovirus Awareness Month  (Res. No. 750) in New York, stating that "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 honor June as New York and National CMV Awareness Month, on Sat., June 5 (National Trails Day), 1:00pm, more than 220 silver rocks, representing the number of newborns disabled by congenital CMV in New York each year, will be placed on the Trail of Hope in Lyons by families affected by CMV. Lisa Saunders will read aloud her "Declaration of Women's CMV Rights and Sentiments," a document inspired by the Women's Rights document of 1848. This event is hosted by Trail Works of Wayne County.  

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.

New York Times article, CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed features Gail J. Demmler-Harrison, MD. She states on her medical blog: “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” (“CMV In Pregnancy: What Should I Know?,” 2014).


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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, "C MV 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: