Lisa Saunders on the 360-mile Erie Canalway Trail in Kirkville, NY, in 2021. Lisa and Jim Saunders plan to walk the entire Trail across upstate New York, leaving #Stop CMV rocks along the way to help prevent #1 birth defects virus. 77 miles walked so far (Photo by Jim Saunders).
Moms and doctors work to ensure women know how to prevent the leading viral cause of birth defects, cytomegalovirus (CMV).
Want to join us?
Baldwinsville, NY--I was the mother of Elizabeth Saunders, born with a severely damaged brain from congenital cytomegalovirus (CMV) in 1989. She had cerebral palsy, developmental delays, epilepsy, and vision and hearing loss. She died in 2006 during a seizure. When I was pregnant with Elizabeth, I ran a licensed child care center in my home, volunteered in our church nursery, and cared for a toddler of my own--all activities that put my pregnancy at risk for cytomegalovirus (CMV), the leading viral cause of birth defects (cdc.gov).
Women who have or work with young children are at greater risk for CMV because the otherwise healthy toddlers in their care are often excreting the virus--especially those in group care. When my husband Jim, now a retired Pfizer scientist, and I were living in Connecticut, we helped the state become the second, after Utah, to pass a CMV testing law in 2015. Having moved back to New York in 2019, we were glad to learn the state passed a CMV testing law in 2018 (Bill A587C), but know more needs to be done in regard to prevention education.
CMV is “'a virus that has a PR problem. It’s the most common congenital infection in every population, happening in 1 out of every 150 babies, yet most pregnant women don’t know about it,'' said Dr. Sallie Permar, Chair, Department of Pediatrics, Weill Cornell Medicine, and pediatrician-in-chief, New York-Presbyterian Komansky Children’s Hospital. "'It’s a virus we have recognized for over 60 years as the cause of birth defects and brain damage in infants...'" (Weill Cornell Medicine, 2021).
Angela Cote of Buffalo appreciates the 2018 New York CMV testing law because it helped doctors diagnose 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."
“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” (NYMetroParents, 2016).
CMV prevention tips from the Centers for Disease Control and Prevention (CDC) state: "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" (https://www.cdc.gov/cmv/fact-s...)
According to the CDC, about 1 in every 200 babies is born with a cCMV infection in the U.S. Of these babies, around 1 in 5 will have long-term health problems (cdc.gov/cmv). Approximately 4,000 babies are born disabled by congenital CMV in the U.S. each year. In 2019, in New York, 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.
Racial and ethnic minorities are particularly at risk for CMV: "Significant racial and ethnic differences exist in the prevalence of cCMV [congenital CMV], even after adjusting for socioeconomic status and maternal age" (Fowler et al., 2018).
In 2021, the State of New York Senate hoped to helped raise awareness of CMV by passing Senate Bill S6287A, 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." The NY Assembly still needs to pass their version of the bill (A7560).
Brandi Hurtubise of 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."
Edel Law of Tappan said, "This bill is important to me because my three-year-old daughter has congenital CMV. It came as a total shock when at 31 weeks pregnant, I found out she had abnormal brain development. Upon further testing, we found out I had contracted and passed CMV onto my daughter. After learning about CMV, it was not shocking that I contracted the virus since I had a toddler in preschool and was an early childhood educator. My daughter has developmental delays, single sided deafness, wears a cochlear implant, and has a form of heart failure."
New York proclaimed June 2021 as Cytomegalovirus Awareness Month (Assembly Resolution No. 346). To kick it off, Trail Works, Inc., hosted an event at its Trail of Hope in Lyons on June 5. A co-sponsor of the Proclamation, Assemblyman Brian Manktelow, reading the entire Proclamation aloud, including 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..." The reading concluded with 220 rocks painted silver (the official color of CMV awareness) placed on the Trail to honor the number of babies born disabled by congenital CMV in New York each year. Kristin Schuster of Canandaigua, mother of Autumn born in 2015 with congenital CMV, painted many of these rocks and, per requests from families unable to attend, wrote the names of 70 children born disabled by CMV on the rocks. Her daughter Autumn tried to help us place the silver rocks on Trail. Jessica Keukelaar of Macedon was in attendance with her first born daughter, Kyleigh, born with congenital CMV in 2018. Like Kristin and myself, Jessica worked professionally with young children during her pregnancy unaware of her occupational risk for CMV. Tabitha Rodenhaus of Buffalo, the mother of a child with congenital CMV, painted #StopCMV rocks for inclusion on the Trail of Hope (watch music video of the event: "Had I Known, Lyrics and Music by Debra Lynn Alt," produced by Mark De Cracker, June 2021).
Jim and I continue to place the #Stop CMV rocks along the 360-mile Erie Canalway Trail as we walk across upstate New York trying to raise awareness.
To learn more about protecting pregnancies from CMV, visit the CDC at: www.cdc.gov/cmv and the National CMV Foundation. If you would like to join the effort to help all women of childbearing age in New York learn CMV prevention, please write to me at LisaSaunders42@gmail.com or visit: Congenitalcmv.blogspot.com or Facebook: NY Stop CMV Project. Educational resources below my bio.
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My Bio:
Lisa Saunders resides in Baldwinsville, New York, with her husband James P. Saunders, a recently retired Pfizer scientist. Lisa is a founding member of the NY Stop CMV Project and volunteers with the National CMV Foundation. In 2015, she was instrumental in helping Connecticut become the second state in the U.S. to require CMV testing for newborns who fail their hearing screen. A graduate of Cornell University, Lisa is a public speaker, a talk show host for PAC-B TV and an award-winning writer. She is the author of several books, including some with a CMV prevention message for children and adults. Lisa and her husband Jim are walking the 360-mile Erie Canalway Trail across upstate New York in hopes of drawing attention to CMV prevention. (Watch Lisa and Jim on Spectrum News: "Couple pushes for law in memory of their daughter" by Jessica Houghtaling, Jul. 01, 2021.
FLIERS/POSTERS
PRESENTATIONS
- For Caregivers/Teachers/Educators: "CMV Training Module Video" (This work was supported by the AUCD and the LEND Pediatric Audiology Program made possible through a Cooperative Agreement with the Health Resources and Services Material Child Health Bureau (MCHB) grant awarded to the University of Connecticut
- For Employers: 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/); Vimeo; Download video workshop. This publication/presentation is by Nellie Brown, MS, CIH, Certified Industrial Hygienist, and Director, Workplace Health and Safety Program, 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). 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.
Notes:
The following six reasons explain why CMV has a "PR problem"
- 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...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)"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).
- 4) 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.)
- 5) 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).
- 6) 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." 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).
Media Coverage
- Spectrum News: "Couple pushes for law in memory of their daughter" by Jessica Houghtaling (Jul. 01, 2021). Includes interview with Dr. Sunil Sood.)
- Finger Lakes Times, "Trail of Hope celebration in Lyons marks CMV Month in New York", Steve Buchiere (Jun 11, 2021).
- Music video: "Had I Known, Lyrics and Music by Debra Lynn Alt," produced by Mark De Cracker (June 2021).
- Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV", Steve Buchiere (June 4, 2021).
- The Citizen: "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness", Robert Harding (June 2, 2121).
- Syracuse Woman magazine, "Fighting CMV One Step at a Time (p.28)", Emma Vallelunga (May 2021) (p.29 image of Stop CMV hand, rock and shirt)
- The Citizen: "'Elizabeth's law,' named for CNY couple's daughter, would boost CMV awareness", Robert Harding (May 4,2021)
- The Citizen, "Challenge for Change: Walking across NY to raise awareness of CMV", David Wilcox (Mar 31, 2021)
- PAC-B TV: "Did You Know? - CytoMegaloVirus (CMV) - What Moms Wished They Knew" (Lisa Saunders interviews moms Angela and Brandi, May 7, 2021).
- Times Herald Record: What every pregnant woman needs to know, Deborah J. Botti
- New York Times, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed" By Catherine Saint Louis (Oct. 24, 2016).
- NYMetroParents, “Could CMV Be the Cause of My Baby's Failed Hearing Test?”(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, March 21, 2016).
CMV LAW PASSED IN CT with LISA SAUNDERS
