Mom Asks NY to Pass "Elizabeth's Law" to stop CMV birth defects

Dear New York Residents,

Please support "Elizabeth's Law", named in memory of our daughter, to prevent other children from being born disabled by the leading viral cause of birth defects, cytomegalovirus (CMV). The Senate passed Elizabeth's Law (Senate Bill S6287), but we need more Assemblymembers to co-sponsor and pass Assembly Bill A7560, which "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...WHO PRACTICE OBSTETRIC AND/OR GYNECOLOGY..."

The proclamation for a Cytomegalovirus Awareness Month in the State of New York states, "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..."

When I was pregnant with my daughter Elizabeth, I was a child care provider, church nursery volunteer and the mother of a toddler--all things that put me at increased risk for contracting CMV. Like most women, I was never educated about CMV.

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,'' states 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.” (“Could CMV Be the Cause of My Baby's Failed Hearing Test?”, NYMetroParents, 2016)

Watch the music video "Had I known (about CMV)" created on June 5, 2021, in honor of Cytomegalovirus Awareness Month. After the New York proclamation was read aloud by Assemblyman Brian Manktelow, families effected by CMV placed more than 220 rocks painted silver (the official color of CMV awareness) on the Trail of Hope in Lyons to honor the number of babies born permanently disabled by congenital CMV in New York each year. Boces students from Career Creations painted more than 100 of these rocks and Kristin Schuster of Canandaigua, mother of Autumn born with congenital CMV, painted 110 rocks. Per requests from families unable to attend, Kristin wrote the names of 70 children disabled by CMV on the rocks. Kristin's daughter Autumn helped place the silver rocks within a heart-shaped border. Jessica Keukelaar of Macedon was in attendance with Kyleigh, born with congenital CMV in 2018. Both Kristin and Jessica worked professionally with young children during their pregnancies with their firstborn children. (Some rocks on the video bare a silver awareness ribbon and "#STOPCMV". Painted by Tabitha Rodenhaus of Kenmore, mother of Kaia born with congenital CMV, these rocks are being left by me on the Erie Canalway Trail across upstate New York between Buffalo and Albany--watch on Spectrum News: "Couple pushes for law in memory of their daughter".)

You can help protect newborns from CMV-related birth defects by asking your assembly member (found here) to co-sponsor Assembly Bill A7560. (More details here: "HOW YOU CAN HELP GET CMV EDUCATION LAW PASSED IN NY.")

Angela Cote of Buffalo appreciates the current New York CMV testing law because it diagnosed why her daughter Elise failed her hearing test, giving her options for early intervention, but she wishes she had known about CMV before her pregnancy with Elise--especially since Angela had an occupational risk for it. "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." I interviewed both Angela and Brandi on PAC-B TV: "Did You Know? - CytoMegaloVirus (CMV) - What Moms Wished They Knew" (May 7, 2021).

If want to know why a law is needed for prevention education, click on: Why Does New York Need a Revised CMV Education Law?

Below my signature is a list of our New York media coverage.

Thank you in advance for your help.

Lisa Saunders
Baldwinsville, NY 13027
Member, @NYStopCMV

So far, our media coverage in New York includes:

1. 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).
2. Finger Lakes Times, "Trail of Hope celebration in Lyons marks CMV Month in New York", Steve Buchiere (Jun 11, 2021).
3. Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV", Steve Buchiere (June 4, 2021).
4. The Citizen: "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness", Robert Harding (June 2, 2121).
5. 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)
6. The Citizen: "'Elizabeth's law,' named for CNY couple's daughter, would boost CMV awareness", Robert Harding (May 4,2021)
7. The Citizen, "Challenge for Change: Walking across NY to raise awareness of CMV", David Wilcox (Mar 31, 2021)
8. Messing About in Boats "Give a Grandma and Grandpa a Lift on the Erie Canal?" (March 2021).
9. 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).
10. Times Herald Record: What every pregnant woman needs to know, Deborah J. Botti

When I lived in Connecticut

1. News 8, “Mystic mother raises awareness of CMV, a risk for pregnant women and their babies”, Sarah Cody (June 13, 2018)