I just received one of the best presents ever—the passing of “Elizabeth’s Law,” named in memory of my daughter. Elizabeth was born with severe brain damage on December 18, 1989. For more than 30 years, I’ve been trying to tell women how to protect their unborn children from the leading viral cause of birth defects.
I felt sick at what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities. But Elizabeth’s case was not a mild one. It took Elizabeth a couple of months to figure out where my face was, but one day she looked directly into my eyes and smiled—we had finally connected. I gradually began to think, “If she doesn’t care that she is profoundly mentally impaired, and, apart from a miracle, will never walk or talk, why should I be so upset?” It took me about a year, but I eventually stopped praying that God would kill me so I could escape my overwhelming anguish over Elizabeth's brain damage.
The medical team at Nyack Hospital did all they could, but she was gone. While holding Elizabeth’s body on his lap, my husband looked down into her partially open, lifeless eyes and cried, “No one is ever going to look at me again the way she did.”
Since then, my husband and I, in an effort to continue raising awareness of CMV, have been walking across New York State between Albany and Buffalo on the 360-mile Erie Canalway Trail. As of November 2022, we have walked 189 miles, which is 53% across the State of New York. We leave #Stop CMV silver rocks along the way, to remind others of our lost children and the future ones we hope to save. The rocks are painted by Tabitha Rodenhaus of Buffalo in honor of her daughter. I used iMovie to make this one-minute video about our quest, Erie Canal Trail: Stop Cytomegalovirus (CMV) Birth Defects. Pass "Elizabeth's Law".
Anyone who would like to learn more about the New York CMV laws can contact Assemblymember Linda B. Rosenthal’s office at 518/455-5802 or Nick Guile, Legislative Director for Assemblymember Rosenthal, at guilen@nyassembly.gov.
When Jim retired from Pfizer, we moved back to New York, this time to Baldwinsville (outside of Syracuse) to be near our grandchildren. I looked into New York's CMV law passed in 2018 and found that it was similar to the targeted CMV testing law passed in Connecticut in 2015. It was spearheaded by Assemblymember Linda B. Rosenthal who decided something had to be done when she read the 2016 New York Times article, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed".
Although the New York CMV law passed in 2018 helped newborns who failed their hearing test receive early intervention, it did little to ensure pregnant women learned how to prevent contracting CMV in the first place. Angela Cote of Buffalo appreciates the 2018 CMV testing law because it diagnosed why her daughter Elise failed her hearing test, giving her options for early intervention , she wishes she knew about CMV 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."
Beginning in 2021, Assemblymember Rosenthal and Senator John W. Mannion, with the help of many CMV families and their friends, doctors and teachers, fought to get "Elizabeth's Law" signed by the Senate, Assembly and then the governor on November 28, 2022.
Like this actor playing George Bailey, Jim and I feel the passage of "Elizabeth's Law" was like us lassoing the moon!
- NYAssembly.gov: “Assemblymember Linda B. Rosenthal Bill to Educate Childcare Providers, Pregnant Patients on Cytomegalovirus Dangers Signed into Law,” November 28, 2022.
- NYSenate.gov: “Senator John W. Mannion’s legislation to protect pregnant women from dangerous viral infection that’s a leading cause of birth defects is signed into law,” November 28, 2022.
Anyone who would like to learn more about the New York CMV laws, or get involved in the effort to see all newborns tested for CMV, can contact Assemblymember Rosenthal's office at: 518.455.5802 or Nick Guile, Legislative Director for Assemblymember Linda B. Rosenthal, at guilen@nyassembly.gov.
From Other New York Families
Brandi Hurtubise of Buffalo, New York National CMV Foundation Alliance Chair, stated, "My daughter Samantha [born 2016] will never walk or talk independently because of a virus no one told me about. No one told me I shouldn't share drinks or food with my toddler while I was pregnant with my daughter. 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 more common than Down Syndrome" (NYAssembly.
Kelly Smolar Gerne, a mechanical engineer from Brooklyn told Lisa Saunders, "My daughter Alexis was born in August 2020 with congenital CMV. With the help of Northwell, Dr. Sood and Nurse Stellato, Alexis is thriving because she was diagnosed and treated early following a failed newborn hearing test. While I am angry about the lack of CMV education prior and during my pregnancy, the CMV testing law passed in 2018 meant our family was the recipient of those who had fought before us. I want to continue that forward so all babies in the State of New York will have the option for early intervention."
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