By Anna Edwards
In 1989, Lisa Saunders of Baldwinsville, was excited to give birth to her daughter, Elizabeth. Like most mothers, she had never heard of cytomegalovirus or been warned about how to prevent it.
“I had no idea anything was wrong with Elizabeth when I was pregnant. The doctors weren’t concerned. They never mentioned prevention,” she said.
When Elizabeth was born, however, the family and doctors saw that something was wrong.
“The first time I saw her I was horrified because she had a very small, deformed head,” Saunders said.
Doctors immediately ran tests on Elizabeth and found out that her mother had passed cytomegalovirus onto her. Saunders had been a licensed childcare provider, a church nursery volunteer and the mother of a toddler. These environments had put her at high risk of CMV, which is often spread through contact with the saliva and urine of young children, without her knowledge.
Cytomegalovirus is the leading viral cause of birth defects. It can range from hearing loss to more extreme disabilities, like in Elizabeth’s case.
“It was a very, very hard adjustment,” Saunders said.
Saunders and her family adjusted to their struggles and lived a happy life with Elizabeth until she died during a seizure at age 16.
After Elizabeth’s death, Saunders made it her mission to educate and warn others about the risk of CMV. In 2015, she was successful in helping to pass a Connecticut law that allowed all newborns that failed the hearing test to be tested for CMV. The passage of the law was a crowning moment for Saunders.
“When it passed, it was the most victorious day of my life since Elizabeth’s birth,” Saunders said. “It put CMV on the map in Connecticut.”
When Saunders moved to New York, she helped to get Elizabeth’s Law passed, which requires childcare providers and physicians to be provided with educational materials regarding congenital cytomegalovirus infection.
But Saunders isn’t done with her work. She believes that far more needs to be done to fight CMV.
“Very little has changed. It’s been an uphill battle,” she said.
June is National Cytomegalovirus Awareness Month, and Saunders wants people to be knowledgeable about the virus and what they can do to decrease risks.
“I want people to be aware of how to protect their pregnancy. That’s why I do everything that I do. So that they won’t be like me: surprised,” she said.
Saunders wants women to know that they shouldn’t share food or drinks with their toddlers or kiss them on the mouth. Children in group care are most likely to be excreting CMV. It doesn’t harm the children, but it can harm a pregnancy. The women at highest risk of contracting CMV are those that have or work with young children.
“Women of childbearing age should know this,” Saunders said.
Currently, Saunders and her husband are walking 360 miles across the Erie Canalway Trail, leaving behind rocks for CMV and bringing publicity to the cause. They have currently walked over 75% of the distance.
“It gives a visual to what we’re doing,” Saunders said.
Saunders has also released a memoir, “Had I Known About CMV: From Shock to Law.” The book discusses the struggle of finding out that her child had severe brain damage and follows with a more general history of CMV.
Saunders will be handing out her memoir at the Strides 4 CMV New York 5K on Saturday, June 29 at 11:00 a.m. at Knox Farms in East Aurora.
She is currently hoping that the Stop CMV Act of 2024 Act gets passed, which will amend the Public Health Service Act to provide CMV screening for newborns.
