I'm the mother of Elizabeth Saunders, born with severe brain damage from congenital cytomegalovirus (CMV) in 1989. 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 had a toddler of my own--all things that put my pregnancy at risk for CMV, the leading viral cause of birth defects, because otherwise healthy toddlers 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.
Now living in New York, we are glad New York passed a CMV testing law in 2018, but more needs to be done in regard to prevention. I wish we didn't need a law to ensure women are educated about CMV, but no other strategy has worked for decades.
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” (“Could CMV Be the Cause of My Baby's Failed Hearing Test?”, NYMetroParents, 2016).
To kick-off New York's June 2021 Cytomegalovirus Awareness Month in Lyons (Wayne County) on June 5, we were fortunate enough to have one of the co-sponsors of the Proclamation read it out loud, including the statement 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..." The reading concluded with a placement of over 220 rocks painted silver, the official color of CMV awareness, within a read, heart-shaped rock border 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 silver 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 in the heart. Jessica Keukelaar of Macedon was in attendance with her firstborn Kyleigh, born with congenital CMV in 2018. Like Kristin and myself, Jessica worked professionally with young children during her pregnancy. You can watch this music video of the event set to a song written for the cause, "Had I Known (about CMV)," at: https://youtu.be/
MEDIA COVERAGE OF CMV
- Spectrum News, "Couple pushes for law in memory of their daughter" Jessica Houghtaling, Jul. 01, 2021. Includes interview with Dr. Sunil Sood and is airing across the Capital region, Hudson Valley, Rochester, Buffalo, North Country and Southern Tier).
- Music video of child placing CMV rocks at the Trail of Hope in Lyons, "Had I Known, Lyrics and Music by Debra Lynn Alt," produced by Mark De Cracker, Jun 8, 2021
- Finger Lakes Times, "Trail of Hope celebration in Lyons marks CMV Month in New York", Steve Buchiere (Jun 11, 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)
- 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?” : “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” (March 21, 2016).
- News 8, “Mystic mother raises awareness of CMV, a risk for pregnant women and their babies”, Sarah Cody (June 13, 2018)
- 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).
- Times Herald Record: What every pregnant woman needs to know, Deborah J. Botti