Lisa Saunders, CMV Awareness and Policy Advocate

Lisa Saunders is seen below holding a photograph of her daughter Elizabeth (1989-2006) with Connecticut Governor Dannel P. Malloy at the ceremonial signing for “Public Act 15-10: An Act Concerning Cytomegalovirus” at the Office of the Governor in Hartford, CT, on July 28, 2015.

Lisa Saunders resides in Baldwinsville, New York, with her husband James P. Saunders, a recently retired Pfizer scientist.  Lisa is a founding member of  the New York Stop CMV Project and volunteers with the National CMV Foundation. In 2015, she was instrumental in helping Connecticut become the second state in the U.S. to enact a law requiring the testing of newborns for CMV if they fail their hearing screen. In 2022, New York passed "Elizabeth's Law', in memory of her daughter, requiring the provision of CMV educational materials to child care providers and pregnant women. 




In 2023, National CMV Foundation honored Lisa Saunders with the Spirit of Advocacy Award. "Lisa has been working on CMV awareness since her daughter was born affected by the virus in 1989. Lisa’s work, in memory of her daughter, has resulted in CMV legislation in 2 states!" (CMV Conference ,Salt Lake City, Utah, Oct. 10, 2023). Amanda Devereaux RN, BSN, Program Director, National CMV Foundation, said, "Lisa's daughter was born severely disabled by congenital CMV in 1989 and she was unaware of CMV even though she was a licensed in-home childcare provider. Lisa's daughter died during a seizure at age of 16, so for over 30 years Lisa and her family have been staunch CMV advocates working to pass CMV legislation in both Connecticut and New York. She was recently featured in the USA Today article featuring her work on CMV awareness and screening. We're so grateful to Lisa for her years of work, inspiring countless other CMV families, including myself, and never taking no for an answer. She is just supremely dedicated to this cause, she just does not stop. So we are so proud of her." 


Lisa was the mother of Elizabeth born severely disabled by congenital cytomegalovirus (CMV) in 1989. Just prior to her pregnancy with Elizabeth, Lisa had a miscarriage but was not tested for CMV or other prenatal infections. Until Elizabeth's birth, Lisa was unaware of CMV and although she was a licensed, in-home child care provider, a church nursery volunteer and the mother of a toddler--all activities that put her at high risk for CMV--she was not educated about the disease and how to reduce her chances of contracting it. A graduate of Cornell University, Lisa is a public speaker, an award-winning writer and the author of several books--some with a CMV prevention message.

Updated 9/6/22. To download CMV resume (more like a CV), click here. 

LETTER FROM LISA SAUNDERS

“Wash Away CMV: Protect Your Pregnancy”

I am Lisa Saunders, the mother of Elizabeth, born severely disabled by congenital cytomegalovirus (CMV). My mission is to prevent Elizabeth’s suffering from happening to other children. According to the New York Times in 2016, CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed.

Most pregnant women know to avoid dirty kitty litter and mosquito bites to protect their unborn babies from disabilities caused by infections.  Very few, however, know how to prevent the leading viral cause of birth defects, congenital CMV. Congenital (present at birth) CMV is a more common cause of disabilities than fetal alcohol syndrome and spina bifida. Of the four million infants born each year in the U.S., approximately 1% are infected prenatally with CMV according to the American Academy of Pediatrics (AAP).  Ten percent of those infants, about 4,000 babies each year, are born with one or multiple abnormalities including hearing and vision loss; intellectual challenges; cerebral palsy; and seizures.

CMV is often found in the bodily fluids of otherwise healthy toddlers. Toddlers can spread the disease to other toddlers by mouthing each other’s toys, and to their adult caregivers who may be unaware of how to properly handle bodily fluids such as saliva and nasal secretions. Unfortunately, most women of childbearing age don’t know about CMV, and don’t realize they should avoid kissing toddlers around the mouth, as well as sharing cups and utensils with them. I was one of those women.

While I was pregnant with Elizabeth, I operated a licensed home daycare center, volunteered in our church nursery, and was the mother of a toddler—all things that put me at higher risk for contracting CMV.

My pregnancy with Elizabeth, due to be born on Christmas Eve of 1989, was a happy experience—until the moment she arrived on December 18th. Upon looking at her, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed.” After a CAT scan, the neonatologist said, "Your daughter has microcephaly—her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." Further tests revealed Elizabeth's birth defects were caused by congenital CMV.

I was then given information from the Centers for Disease Control and Prevention (CDC) stating that, "People who care for or work closely with young children may be at greater risk of CMV infection than other people because CMV infection is common among young children..." This information came too late to spare my daughter the years of suffering that lay ahead. Nowhere in my daycare licensing training was CMV mentioned. CMV prevention was not discussed in my prenatal doctor visits. 

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. When my husband Jim heard Elizabeth's grim prognosis, he stared at her and said, “She needs me”—just like Charlie Brown with that pathetic Christmas tree.

It took me about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish over Elizabeth's condition. Life did become good again—but it took a lot of help from family, friends, some Valium, and the Book of Psalms. Although Elizabeth was profoundly mentally impaired, legally blind, had cerebral palsy, epilepsy and a progressive hearing loss, we were eventually able to move forward as a happy, "normal" family. 

Years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. When the song “I’ll be home for Christmas” played on the radio, I cried thinking how hard Elizabeth fought to be home with us, overcoming several battles with pneumonia, major surgeries, and seizures. Weighing only 50 pounds, she looked funny to strangers because of her small head and adult teeth, but she was lovely to us with her long brown hair, large blue eyes and a soul-capturing smile. She even won the "Best Smiling Award" at school. Although still in diapers and unable to speak or hold up her head, Elizabeth loved going for long car rides. She especially enjoyed school and being surrounded by people, paying no mind to the stares of “normal” children who thought she belonged on the "Island of Misfit Toys."

In 2006, less than two months after she turned 16, 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 what she said every time, “Elizabeth is always a good girl!” With that, I left.

At the end of the day, I got the call I always feared. “Mrs. Saunders, Elizabeth had a seizure and she’s not breathing." The medical team 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.”

Shortly after Elizabeth died, I had a nightmare: visiting a support group of new parents of children with congenital CMV, they suddenly looked at me and asked, “Why didn’t you do more to warn us about CMV?”

Although I had written about Elizabeth’s life with her tomboy sister and a series of dysfunctional pets in my book, “Anything But a Dog: the perfect pet for a girl with congenital CMV,” which was also published in Japan, CMV remains largely unknown.

In 2012, because of my online presence as a writer and speaker about CMV, I received an email from a grandmother distraught about her grandson born with congenital CMV. The baby’s mother was a high school student interning in a Connecticut childcare center. The young mother, just like me many years earlier, was unaware she was putting her pregnancy at greater risk by working with toddlers. Eight - 20% of caregivers/teachers contract CMV

(AAP et al., 2011). About 44 to 100% of two-year-olds in group daycare are excreting CMV (Pass et al., 1986).

When I visited the new mother and baby in the hospital, the attending nurse asked me, "Knowing what you do about CMV, why don’t you launch an awareness campaign?"

I explained to the nurse that CMV parents, scientists and doctors have been trying for years to raise awareness but we can’t sustain meaningful, long-term change without government help. “Despite being the leading cause of mental retardation and disability in children, there are currently no national public awareness campaigns on CMV” (Clinical Advisor, 2014).

I finally made some headway in 2015. By modeling efforts in Utah, I helped Connecticut become the second state to pass a law requiring babies who fail their hearing exam to be tested for CMV. But CMV prevention education is also needed—especially since studies have shown that the effectiveness of hygienic precautions is greater than 75% (Adler, 2015).

According to a recent study, only 18.5% of licensed “in-home” daycare providers have heard of CMV and “Providers do not know how to appropriately sanitize surfaces to reduce spread of disease” (Thackeray et al., 2016).  For example, many providers use diaper wipes to clean a surface, but diaper wipes do not sanitize it.  Given that “61 % of children under the age of 5 are cared for in a child care facility...Intervening with child care providers and parents through child care facilities are key opportunities to reduce prevalence of CMV infection and other diseases.” 

My goal is to make CMV prevention required training in child care centers across the country. The American Academy of Pediatrics states in their book, “Caring For Our Children,” that “Child care staff members should receive counseling in regard to the risks of acquiring CMV from their primary health care provider. However, it is also important for the child care center director to inform infant caregivers/teachers of the increased risk of exposure to CMV during pregnancy.”

“Increasing risk perception is important because providers may not be concerned about taking measures to reduce the probability of infection if they feel that they are at low risk” (Thackeray et al., 2016).

According to the Occupational Safety and Health Administration (OSHA), it is a worker's right to know occupational hazards. Given there are more than half a million child care workers in the U.S. (Childcare Aware of America, 2016), that mothers of children in daycare are also at increased risk for CMV  (Pass et al., 1986), and that congenital CMV costs the U.S. health care system approximately 1.86 billion annually (Modlin, et al., 2004), it’s time for a national CMV prevention campaign.

To help prevent CMV (and other diseases spread by saliva), I provide educational materials for the whole family with my “color-me-in” fairytale, “Once Upon a Placemat: A Table Setting Tale,” which includes a free teaching toolkit. The fairytale, co-authored by my daughter Jackie Tortora, uses "Grandma" to speak for “Miss Cup” to enforce germ prevention, and features “Mr. Knife's” fear of the dish running away with the spoon to teach table-setting. The teaching toolkit includes  placemats, with the tableware characters correctly arranged, for downloading, coloring and laminating. The other side of the placemat features germ prevention and hand-washing tips. A YouTube video introduces children to the placemat characters and how to download the free placemats.

I present CMV prevention education through workshops,  public service announcements, health fairs, and my articles such as  "The Danger of Spreading CMV: How We Can Protect Our Children" (ChildCare Aware of America, 2017). I interview health experts, including Yale University doctors, on “The Lisa Saunders Show” (SEC-TV, channel 12 and YouTube) and regularly write about CMV in newsletters to healthcare professionals, for my “Congenital CMV”  blog, and for germ-fighting organizations such as “Henry the Hand.” My Facebook pages,  "CMV in Child Care" and "Congenital CMV News," encourage behavioral changes through hand-washing and no cup sharing campaigns.

If you can help raise CMV awareness, according to studies on prevention, our nation should have a higher number of healthy newborns.

Thank you in advance for your help! 

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Lisa Saunders is seen below holding a photograph of her daughter Elizabeth (1989-2006) with Connecticut Governor Dannel P. Malloy at the ceremonial signing for “Public Act 15-10: An Act Concerning Cytomegalovirus” at the Office of the Governor in Hartford, CT, on July 28, 2015.

Connecticut Governor Dannel P. Malloy at the ceremonial signing for “Public Act 15-10: An Act Concerning Cytomegalovirus” at the Office of the Governor in Hartford, CT, on July 28, 2015.  (L to R): Jane Baird, Government Relations, Connecticut Children's Medical Center; Dr. Wallis Molchen, Chief Resident, Connecticut Children’s Medical Center; Jane Brancifort, Deputy Commissioner, Connecticut Department of Public Health; State Representative, John Hampton; Dr. Brenda K. Balch, American Academy of Pediatrics Early Hearing Detection and Intervention Chapter Champion; Lt. Governor Nancy Wyman; Lisa Saunders, parent rep, Congenital Cytomegalovirus Foundation, holding picture of daughter Elizabeth; Kevin Ryan, State Representative; Governor Dannel P. Malloy; Cathy Osten, State Senator; Ken Hiscoe, Pfizer, Government Relations; Jarred and his mother, Melvette Ruffin; DeVaughn Ward, Liaison, Department of Public Health; and Kinson Perry, lobbyist at Rome, Smith & Lutz.

 Contact Lisa Saunders

 LisaSaunders42@gmail.com

http://www.authorlisasaunders.com/

https://www.facebook.com/congenitalcmvnews/

 http://congenitalcmv.blogspot.com/

Types of Organizations Lisa collaborates with: click here

* The "Spirit of Advocacy Award is given to an individual or family who has been impacted by congenital CMV. The recipient has/have demonstrated dedication to CMV advocacy efforts nationally or locally within their state/region. Recipients have used their personal struggle with CMV to advocate for CMV education, awareness, and/or policy change in an effort to prevent pregnancy loss, childhood death, and disability due to CMV. "