Lisa Saunders with her daughter Elizabeth Saunders
New York Moms Will Learn How to Stop CMV From Hurting Their Unborn Babies
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, and now, I finally found a way—at least in New York.
“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), the leading viral cause of birth defects. “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. Women who have or care for toddlers are at higher risk for contracting CMV because young children are often excreting the virus, though it is harmless to them.
When Elizabeth was born, I felt a stab of fear. “Her head looks so small—so deformed,” I thought. The doctors were concerned too. 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. Did I not 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 had learned infection control measures but was not made aware of the risks. For example, I used diaper wipes to clean off saliva or urine, which are ineffective against CMV. Additionally, I should have refrained from sharing cups and food with my own toddler, and washing my hands after picking up toys. 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. The moment Jim heard the doctor’s dire predictions over Elizabeth’s life, he stared at her and said, “She needs me”—just like Charlie Brown with that pathetic Christmas tree. Elizabeth’s pediatrician had come to the hospital to conduct his initial assessment and at her release, smiled at me and said, “God has chosen you to raise Elizabeth—remember that.” He was the first to suggest that her life wasn’t some hopeless, meaningless tragedy.
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–damage that might have been prevented had I known about CMV.
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 did research. I wrote articles and books.
In 2015, I managed, with the help of CMV advocates across the country, to get a Connecticut CMV law passed that requires testing a newborn for the virus if they fail their hearing exam.
In 2021, I collaborated with other parents of CMV children on a New York June 2021 Cytomegalovirus Awareness Month event with Trail Works in Lyons. In announcing the awareness month, co-sponsor Assemblymember Brian Manktelow said: “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.
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, Jim and I have walked 189 miles, which is 53% across the State of New York. We leave rocks along the way, to remind others of our children lost and future ones we hope to save. The #Stop CMV silver rocks are painted by Tabitha Rodenhaus of Buffalo. We walk in all kinds of weather and have been chased by everything from swarms of mosquitoes, biting flies, lightning and torrential downpours, to freezing rain and blinding snow. We’ve confronted snakes, floods, slippery ice, chafing underwear, aching feet, swollen knees, and a desperate need to find a bathroom. But it’s all worth it if our walk brings attention to CMV!
For more information about CMV, the CDC has fliers in English and Spanish.
