My daughter would have turned 32 today--tell moms how to Stop CMV

My daughter Elizabeth, born on December 18, 1989, would be celebrating her 32nd birthday today if she hadn't been born with congenital cytomegalovirus (CMV), the leading viral cause of birth defects. Had I known about CMV before my pregnancy, things may have turned out so differently.

Please tell the families you love that pregnant women need to use caution around the saliva and urine of the toddlers in their care. Women who have or work with young children are at greater risk for CMV because the otherwise healthy toddlers in their care can often be excreting the virus--especially those in group care. The CDC states: "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-sheets/parents-pregnant-women.html)

Elizabeth was born with a severely damaged brain from congenital CMV. 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 CMV--yet I never heard of it.

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).

"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, “Could CMV Be the Cause of My Baby's Failed Hearing Test?”).

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.

Now, Jim and I want to prevent other newborns from suffering from congenital CMV through the passage of "Elizabeth's Law" (Assembly Bill A7560), named in memory of our daughter. To date, we have walked over 100 miles on the Erie Canalway Trail between Palmyra and Rome, leaving silver-painted #StopCMV rocks along the way. Our goal is to walk the entire 360 miles between Buffalo and Albany. Tabitha Rodenhaus of Kenmore, mother of Kaia born with congenital CMV, paints the #StopCMV rocks for us to leave along the Trail. (See my one-minute video of our journey by clicking here).

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, even after adjusting for socioeconomic status and maternal age" (Fowler et al., 2018).

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 on June 5. (Watch music video: "Had I Known, Lyrics and Music by Debra Lynn Alt," produced by Mark De Cracker, June 2021).

In 2021, the NY 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, Assembly Bill A7560. (The Assembly sponsor is Linda Rosenthal and Assembly co-sponsors so far are: William Magnarelli, Fred Thiele, Nily Rozic, Brian Manktelow. The Senate sponsor is: John W. Mannion and co-sponsors so far are: George M. Borrello, Pamela Helming, Mike Martucci.)

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 the NY Stop CMV Project on Facebook.

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Media Coverage

• Eagle Newsroom, "Baldwinsville couple advocates for ‘Elizabeth’s Law’ to stop cytomegalovirus:Bill named in memory of their daughter," Dec. 14, 2021.
• 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

• Cornell Alumni Magazine: "In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action," Alexandra Bond (Sept/Oct 2015).