A memorial of 220 silver rocks (the color of CMV awareness) on the Trail of Hope in Lyons, NY, honoring the number of babies born disabled by congenital CMV in New York each year, was created as part of a June 2021 CMV Awareness Month presentation. The rocks memorialize the names of 70 children that families asked to be included.
Elizabeth Saunders with her mom, Lisa Saunders.
This memorial of 220 silver rocks (the color of CMV awareness) left on the Trail of Hope in Lyons, NY, honors the number of babies born disabled by congenital CMV in New York each year. It was created as part of a June 2021 CMV Awareness Month presentation. The rocks memorialize the names of 70 children whose families asked to be included. Lisa's story: “The passing of ‘Elizabeth’s Law’: A priceless gift” (2022)
The Passing of ‘Elizabeth’s Law’ - A Priceless Gift
New York Moms Will Learn How to Stop CMV From Hurting
Their Unborn Babies
A first-person narrative piece by LISA SAUNDERS
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.
“Elizabeth’s Law” (A7560B/S6287C) was signed by the governor on November 28. The law ensures pregnant women and child care providers receive information on how to prevent contracting cytomegalovirus (CMV). "About one out of every 200 babies is born with congenital CMV infection. About one in five babies with congenital CMV infection will have long-term health problems" (cdc.gov/cmv).
When I was pregnant with Elizabeth, I was a licensed, in-home childcare provider, church nursery volunteer, and the mother of a toddler—all things that put me at increased risk for CMV—yet I was never educated about the virus.
When Elizabeth was born, I felt a stab of fear. “Her head looks so small—so deformed,” I thought. After a CAT scan and other tests, the neonatologist concluded Elizabeth’s small head, known as microcephaly, was caused by congenital (present at birth) CMV. He said, “Your daughter’s brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself.” I was then handed printed information on congenital CMV.
My head spun as I read that caregivers and teachers of young children are at greater risk for contracting CMV. Didn’t I live in a country where workers have the right to “receive information and training about hazards, methods to prevent harm?” (OSH Act of 1970)
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.
Years later, on Elizabeth’s 16th birthday, I awoke proud. When “I’ll be home for Christmas” played on the radio, I cried thinking how hard Elizabeth fought to be home for yet another Christmas. She had overcome battles with pneumonia, major surgeries, and most recently, seizures. Weighing only 50 pounds and at the development level of a three-month-old, she looked funny to strangers with her small head and adult teeth, but she was lovely to us with her long, brown hair, large blue eyes and soul-capturing smile. Although still in diapers and unable to speak or hold up her head, Elizabeth was very happy and loved being at school.
Over a month later, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, “Now be a good girl today.” She smiled as she heard her teacher say “Elizabeth is always a good girl!” With that, I left. At day's end, I got the call I had feared. “Mrs. Saunders, Elizabeth had a seizure and she’s not breathing.”
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.”
Feeling lost and empty, I sought the comfort of my bed. But then I suffered a tormenting dream: Finding myself in a support group of young parents with babies disabled by congenital CMV, I dreaded my turn to speak. When I told the group about Elizabeth’s birth 16 years earlier, the parents stared incredulously at me. Why hadn’t I done everything humanly possible to warn them about CMV—why hadn’t I shouted it from the rooftops?
Since that dream in 2006, CMV advocacy has become my mission in life. I wrote articles and books, and in 2015, with the help of CMV advocates across the country, to get a Connecticut CMV law passed that requires testing a newborn for CMV if they fail their hearing exam.
In 2021, I collaborated with other parents of CMV children for a New York June Cytomegalovirus Awareness Month event with Trail Works in Lyons. We left over 220 silver rocks (the color of CMV awareness) on the Trail of Hope to honor the number of babies born disabled by congenital CMV in New York each year.
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.
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Elizabeth's nurses also sparked feelings of love in me toward Elizabeth. “Look, she loves to have her head rubbed,” one said as she held her in the crook of her arm and rubbed the top of her head with her free hand. “Take her home and enjoy her—try not to worry about what her future holds. Just take it one day at a time.”
But once home, I was so depressed I could barely function. All I could do was rock Elizabeth and watch movies such as "It's a Wonderful Life" to give me a reason to live. I spent hours listening to sad music about others who endured indescribable suffering and immersed myself in the Book of Psalms. Before Elizabeth was born, I couldn’t relate to the Psalmists tales of agony. I thought, “Wow, those people are really depressed!” Now, I found comfort in their bitter questions, such as, “How long must I bear pain in my soul, and have sorrow all the day?” I prayed God would help me love Elizabeth just the way she was—to see her as a little girl and not just some hopeless prognosis. If I was ever to move forward and find happiness again, I knew I had to stop dwelling on the unanswerable questions that kept popping into my head like, “Why would God let me catch CMV?”; “Why wasn't I warned about this?” and “Who did I catch it from?” One of Elizabeth’s many doctors, a specialist who knew of my mental torment and guilt over catching CMV reminded me, “You’ll never know for certain where you caught it. The majority of adults have had it at one time in their lives. You need to move on and make the best of the situation. This isn’t your fault. It just happened.” Jim didn’t blame me for catching it, why was I still blaming myself? I began having debilitating anxiety attacks as I pondered her future and was prescribed Valium so I could calm down enough to care for my children.
It took Elizabeth a couple of months to figure out where my face was, but then 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?” Maybe it was the Valium talking, but that thought gradually stuck with me. I no longer needed “mother’s little helpers” to get me out of bed and into the shower.
I no longer focused on Elizabeth’s disabilities, but on her abilities—her appreciation for being alive for one. Although she could not hold up her head or move her tightly clenched fists to reach a toy, she could hear and see—at least a little. She could not sit up by herself much less crawl, but she could sit for hours snuggled contentedly in my lap and study my face with her large blue eyes framed by long dark eyelashes. When I smiled at her, she’d break into an ear-to-ear grin in return, letting me know that my happiness with her was all she needed to be satisfied in this world. I decided to follow the nurse’s advice and just think about Elizabeth’s care one day at a time. There was no use in letting myself get overwhelmed with despair over what Elizabeth might not be able to do in the future. Today’s tasks were what I needed to tackle. I was told Elizabeth could die unexpectedly at any moment. I could die at any moment for that matter. What was the point of losing my sanity fretting about tomorrow?
In 2010, Jim and I moved from New York to Connecticut when Jim was transferred by Pfizer. In 2012, I received an email from a distressed grandmother about her grandson just born with congenital CMV. The baby's mother was a high school student interning in a daycare center. The young mother, just like me decades earlier, was unaware she was putting her pregnancy at increased risk by working with young children. When I visited the family in the hospital, the attending nurse asked me, "Knowing what you do about CMV, why haven’t you launched an awareness campaign?" I explained to her that CMV parents, teachers, scientists and doctors have been trying for years to raise awareness, but the virus remains little known because
CMV education is not "part of standard prenatal care” (Washington Post, 2021), doctors don’t want to frighten, worry or “burden” patients (New York Times, 2016), and although OSHA lists CMV as a "Recognized Hazard", there are no federal laws governing CMV education policies for child care workers. 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".
I joined a CMV Facebook group geared to families in western New York, where I met Kristin Schuster of Canandaigua, the mother of Autumn born with congenital CMV in 2015. Autumn is her first child. Kristin told me, "I was teaching in a pre-kindergarten inclusion classroom while pregnant with Autumn and was unaware of the dangers of CMV exposure." Kristin and I collaborated on a New York June 2021 Cytomegalovirus Awareness Month event with Mark De Cracker of Trail Works in Lyons. A co-sponsor of the Awareness Month Proclamation, Assemblymember Brian Manktelow,
read the Proclamation aloud: "...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 us leaving over 220 silver rocks (the color of CMV awareness) on the Trail of Hope to honor the number of babies born disabled by congenital CMV in New York each year. Kristin painted many of these silver rocks and, per requests from families unable to attend, featured the names of 70 children born disabled by CMV on the rocks. Tabitha Rodenhaus of Buffalo sent in the #Stop CMV rocks she painted in honor of her daughter Kaia, born in 2016, and Boces students from Career Creations painted over 100 rocks. Kristin's daughter Autumn tried to help us place the silver rocks within a red rock shaped heart. Jessica Keukelaar of Macedon watched with her first child Kyleigh, born with congenital CMV in 2018. Like Kristin and myself, Jessica worked professionally with young children during her pregnancy and was unaware of her occupational risk for CMV (see music video of the event: "Had I Known (about CMV)," at: https://youtu.be/dUEQmKrG354).
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.
Less than two weeks after the law passed, Jim and I went to Seneca Falls, New York, for its annual celebration of “It’s a Wonderful Life” movie. Seneca Falls, and its canal bridge where a woman tried to take her own life, is the town that supposedly inspired upstate New York's "Bedford Falls" in the movie. The It's a Wonderful Life museum is a collection of photos and memorabilia from the movie, which includes information on Suicide Prevention. During the celebration, I met the actress who played little Zuzu (remember "Zuzu's petals"?), Karolyn Grimes, who flew in from California. I told her how much her movie meant to me after Elizabeth was born with such an awful prognosis. She seemed interested to hear more, so I told her about "Elizabeth's Law" passing and all the help received from friends, etc. I told her how women can reduce their chances of contracting it. She hoped there was a similar law in California. Meeting her was a full circle moment for me. I later learned that her own son ended his life, which is probably why she flies from California every year to meet folks in upstate New York touched by her movie. Karolyn Grimes autographed her children's book, "Zuzu's Petals, A Dream of It's a Wonderful Life" for me.
Jim and I will actress Karolyn Grimes
Like this actor playing George Bailey, Jim and I feel the passage of "Elizabeth's Law" was like us lassoing the moon!
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To learn more about "Elizabeth's Law" (Bills A7560B/S6287C), see the following press releases from the sponsors of the bill: 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.gov, November 2022). (I interviewed Brandi on local access TV: CytoMegaloVirus (CMV) - What Moms Wished They Knew, PAC-B TV, 2021. (Brandi can be reached at nationalcmvny@gmail.com or visit: nationalcmv.org).
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."
Edel Law of Tappan told Lisa Saunders that Elizabeth's Law "is important to me because my three-year-old daughter has congenital CMV. It came as a total shock when at 31 weeks pregnant, I found out she had abnormal brain development. Upon further testing, we found out I had contracted and passed CMV onto my daughter. After learning about CMV, it was not shocking that I contracted the virus since I had a toddler in preschool and was an early childhood educator. My daughter has developmental delays, single sided deafness, wears a cochlear implant, and has a form of heart failure."
Other mothers have also shared their stories on TV, hoping to prevent this from happening to other families. ”Imagine giving birth to a seemingly healthy newborn baby, only to find out a few weeks down the road that your baby is deaf…That is what happened to a Western New York family and they have found that they are not alone…” Marielle Fitzgerald, the baby’s mother, said, “‘Like most pregnant women, I did everything I could to ensure a healthy pregnancy…I followed all of my doctors recommendations to avoid certain foods. I didn't go on a vacation to Florida with our family to avoid Zika, right? But no one probably ever said I should avoid my own daughter's saliva. And if they had, I would have’”(CMV: Virus causing deafness in newborns, WGRZ-TV, 2017).
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