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: 
 

 


6/15/21

The 360-Mile Erie Canalway Challenge

June is Cytomegalovirus (CMV) Awareness Month

Grandparents walk the "8th Wonder of the World" while raising awareness of cogenital CMV, the #1 birth defects virus

My husband Jim, now a retired Pfizer scientist, has been sharing in my latest adventure, walking the 360-mile Erie Canalway Challenge across upstate New York, in hopes of raising awareness of another “C-virus” plaguing the country--cytomegalovirus (CMV), the leading viral cause of birth defects. Our daughter Elizabeth was born severely disabled by congenital CMV and died at 16 in 2006. According to the CDC, CMV is the most common infectious cause of birth defects in the United States. "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." (www.cdc.gov/cmv).

As we stroll one-two mile segments of the Trail each week to log miles on the Erie Canalway Trail between Buffalo and Albany, I wonder if we will ever finish--and find a bathroom in time! Since beginning on April 23, 2020, in Camillus, the midpoint of the Trail, we have logged 57 miles--only 303 to go! We have endured swarms of mosquitoes, snakes, snow, ice, lightning, torrential downpours, violent wind cracking trees above, loud gunshots, aching feet and a dead possum. In the meantime, we have been researching the history of the Erie Canal. Will I ever uncover what truly happened to my Aunt Rebecca whose body was found in her car submerged in the Canal in Brockport?

When we are not busy walking the Erie Canal Trail or caring for grandchildren and my mother, we are asking New York legislators to revise the current CMV law to include prevention education so women of childbearing age can learn how to protect their pregnancies. June 2021 was proclaimed Cytomegalovirus Awareness Month in the State of New York, with the statement: "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..."

More needs to be done to make sure women are educated about CMV. The Senate passed S6287, named in memory of our daughter, but we need more Assemblymembers to co-sponsor and pass A7560, which "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."

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 believe by walking the Erie Canalway Trail, we can share with fans of the Trail our belief that women have the right to know how to protect their unborn babies from CMV. As I blog about our Erie Canalway Challenge while commenting on our progress toward raising CMV awareness, I hope our walk will become like the women’s rights movement that will "spread across upstate New York to the rest of the country" to help prevent birth defects caused by congenital CMV. I wonder if our fight for a CMV education law will be as tough to pass as was the legislation to build the first Erie Canal in 1825, known as "Clinton's Ditch."

Even my mother, now a great-grandmother, took the one-mile Erie Canalway Challenge to help stop CMV! 

One mother living near the Erie Canal in the Buffalo area heard of my quest and has been painting #StopCMV rocks for me to leave along the Trail to raise awareness. Tabitha Rodenhaus of Kenmore paints "#Stop CMV" rocks with a silver ribbon because silver is the official color of CMV awareness. The back of her rocks reads: "Please help us raise awareness by posting a pic of this rock on social media using #StopCMV. Thank you Kaia's Mom."

As we walk the Trail, I'm also looking for the "7 Wonders of the Erie Canalway Trail" so I have something to write about. Once Jim and I agree on what those Wonders are, I will ask the public to vote on the "8th Wonder" as the Erie Canal itself  was considered the "8th Wonder of the World"--another ploy to raise awareness of CMV. When I ran the "Help Wanted" blurb, "Weary Grandparents Seek to Hitch Ride on Erie Canal to Stop CMV" in a boating magazine, it raised awareness among boaters willing to get us through the locks of the active Erie Canal.

What can you do to help?

The CMV education bill was passed by the Senate, but the Assembly was unable to vote on it during the 2021 legislative season as it was not voted out of the Assembly Committee on Children and Families in time. 


So, we need to try again for the 2022 season. Please contact your assemblymember (calling AND emailing is most effective). You can find out who your assemblymember is through the link, https://nyassembly.gov/mem/search/ then ask them to co-sponsor A7560 (https://www.nysenate.gov/legislation/bills/2021/a7560). The primary sponsor of the bill is Assemblymember Linda B. Rosenthal and the following are currently co-sponsors: William Magnarelli and Fred Thiele.


A phone call usually takes about 30 seconds since you will often just reach the answering machine or a staff member taking messages for your assemblymember.   An email is quick, too. Either way,  you can say something like:


My name is __________and I live in your district  on _____________ (street)  in the Town of ___________. I want  you to co-sponsor A7560 because I want to ensure women are educated about how to protect their pregnancies from the leading viral cause of birth defects, cytomegalovirus or CMV. The CDC has a lot of information about this preventable disease at: https://www.cdc.gov/cmv

As you are aware, New York proclaimed June 2021 as Cytomegalovirus Awareness Month, stating, that "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..."

If you need more information, you can call me at ____________ . I would be happy to email additional information to you. 

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If you have some time and are truly passionate about preventing birth defects, then contact all 25 co-sponsors of the June 2021 Cytomegalovirus Awareness Month proclamation, all 17 members of the Assembly Children and Families Committee, plus the assemblymembers still in office who co-sponsored the CMV testing bill that passed in 2018, Assembly Bill A587C, which include, 

Steve Englebright
District 4
EngleS@nyassembly.gov
149 Main Street
East Setauket, NY 11733
631-751-3094
LOB 621
Albany, NY 12248
518-455-4804

Aileen M. Gunther
District 100
GuntheA@nyassembly.gov
18 Anawana Lake Road
Monticello, NY 12701
845-794-5807
Middletown City Hall, 3rd floor
16 James Street
Middletown, NY 10940
845-342-9304
LOB 826
Albany, NY 12248
518-455-5355

Alicia Hyndman
District 29
hyndmana@nyassembly.gov
232-06A Merrick Blvd.
Springfield Gardens, NY 11413
718-723-5412
LOB 702
Albany, NY 12248
518-455-4451

Donna A. Lupardo
District 123
LupardoD@nyassembly.gov
State Office Building, 17th Floor
44 Hawley St.
Binghamton, NY 13901
607-723-9047
LOB 828
Albany, NY 12248
518-455-5431
Fax: 518-455-5693

David G. McDonough
District 14
mcdonoughd@nyassembly.gov
404 Bedford Ave.
Bellmore, NY 11710
516-409-2070
Fax: 516-409-2073
LOB 443
Albany, NY 12248
518-455-4633
Fax: 518-455-5559

Catherine Nolan
District 37
NolanC@nyassembly.gov
47-40 21 Street Room 810
Long Island City, NY 11101
718-784-3194
Fax: 718-472-0648
LOB 739
Albany, NY 12248
518-455-4851

Angelo Santabarbara
District 111
SantabarbaraA@nyassembly.gov
2550 Riverfront Center
Amsterdam, NY 12010
518-843-0227
433 State Street
Schenectady, NY 12305
518-382-2941
LOB 654
Albany, NY 12248
518-455-5197

Jo Anne Simon
District 52
simonj@nyassembly.gov
341 Smith Street
Brooklyn, NY 11231
718-246-4889
LOB 435
Albany, NY 12248
518-455-5426

Phil Steck
District 110
SteckP@nyassembly.gov
1609 Union Street
Schenectady, NY 12309
518-377-0902
Fax: 518-377-0458
LOB 627
Albany, NY 12248
518-455-5931
Fax: 518-455-5840

Kenneth Zebrowski
District 96
ZebrowskiK@nyassembly.gov
67 North Main Street
New City, NY 10956
845-634-9791
LOB 625
Albany, NY 12248
518-455-5735  

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