BALDWINSVILLE — Lisa and Jim Saunders of New York Stop CMV want to prevent newborns from suffering the leading viral cause of birth defects, congenital cytomegalovirus (CMV), through the passage of “Elizabeth’s Law” (Assembly Bill A7560), named in memory of their daughter.
To date, the couple has walked more than 100 miles on the Erie Canalway Trail between Newark and Rome, leaving silver-painted #StopCMV rocks along the way. Their goal is to walk the entire 360 miles between Buffalo and Albany. Tabitha Rodenhaus of Kenmore, whose child Kaia was born with congenital CMV, paints the #StopCMV rocks for the Saunders family to leave along the Trail.
The Saunders family lives in Baldwinsville. Lisa shared the story of their daughter, Elizabeth, who was born with brain damage from congenital CMV in 1989.
“She had cerebral palsy, developmental delays, epilepsy, and vision and hearing loss. She died in 2006 during a seizure,” Lisa Saunders said. “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 CMV — yet I never heard of it.”
In 2021, the Senate passed 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 Assembly still needs to pass their version of the bill (A7560).
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.
The Saunders family has a history of advocating for the fight against CMV.
“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 more needs to be done in regard to prevention education and testing,” Lisa Saunders said.
“[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,” reads a Weill Cornell Medicine publication (2021).
“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,” said 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.
According to parenting publication NY Metro Parents, “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.”
The Centers for Disease Control and Prevention (CDC) offer tips to prevent CMV: “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.”
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, according to a 2018 study. “Significant racial and ethnic differences exist in the prevalence of cCMV, even after adjusting for socioeconomic status and maternal age,” concluded the study, published in The Journal of Pediatrics.
Legislators, families and doctors are also working on a revised CMV testing law to help more babies. In 2018, Senate Bill S2816 was passed (authored by Assemblymember Linda B. Rosenthal). At present, proposed Assembly Bill A08217, also sponsored by Assemblywoman Rosenthal, “requires a local health department to report positive cytomegalovirus results.”
New York proclaimed June 2021 as Cytomegalovirus Awareness Month (Assembly Resolution No. 346). An event to raise awareness was held at the Trail of Hope in the Erie Canal town of Lyons.
To learn more about protecting pregnancies from CMV, visit cdc.gov/cmv or the National CMV Foundation (nationalcmv.org). If you would like to join the effort to help all women of childbearing age in New York learn about CMV prevention, please write to Lisa Saunders at [email protected] or visit Congenitalcmv.blogspot.com or the NY Stop CMV Project on Facebook.
