After I give a talk about my daughter's 16-year life with congenital cytomegalovirus (CMV), and the audience learns that congenital CMV is the little-known, leading cause of birth defects, many ask, "How can I help?"
The best ways to help your family and friends protect their pregnancies from CMV:
1) Share the following fliers with family, friends, health professionals, and legislators on CMV:
2) Write/call to your representatives, asking them to co-sponsor and pass the following New York CMV legislation:
Bill A3956/S5454:"Requires cytomegalovirus [CMV] screening for every newborn..."
Bill A3074/S7662: "Requires reporting of positive cytomegalovirus results." Newborns "SHALL BE REFERRED TO A PEDIATRIC INFECTIOUS DISEASE SPECIALIST...BEFORE...FOUR WEEKS…EXAMINATION SHALL INCLUDE…EYE EXAM BY AN OPHTHALMOLOGIST; AND HEARING...”
- This legislation would require mandating universal congenital CMV (cCMV) screening for all newborns to allow for timely diagnosis and interventions.
- Congenital CMV is one of the most common congenital diseases in infants in the United States and the leading viral cause of birth defects and developmental disabilities.
- 91% of women do not know about the disease or prevention during pregnancy.
- Then, if possible, share why this issue is important to you personally and the impact cCMV has had on your life or the life of someone you know. These stories are often the best way to connect with legislators!
FYI, here is my letter to my senator, Rachel May. She became a sponsor of both bills:
Please sponsor 2025 cytomegalovirus (CMV) bills A3956 and A3074
Congenital CMV can cause autism and is the leading non-heredity cause of hearing loss
Dear Senator Rachel May:
My name is Lisa Saunders, I live in your district, and I would like you to sponsor two bills that relate to congenital cytomegalovirus (CMV), a leading cause of birth defects.
In 1989, my daughter Elizabeth was born with severe brain damage from congenital CMV. When pregnant with her, I was unaware of CMV, and although I was a licensed, “in-home” child care provider and the mother of a toddler – things that put me at high risk for CMV – I was not informed about CMV prevention. (At 16, Elizabeth died during a seizure.)
According to the American College of Obstetricians and Gynecologists (ACOG), “CMV can be passed from a pregnant person to their fetus. About one in 200 infants are born with a congenital CMV infection; of those, about one in five will have birth defects or other long-term health problems” (ACOG, 2024).
Congenital CMV causes more disabilities than “Down Syndrome, Fetal Alcohol Syndrome, Pediatric HIV/AIDS, Spina Bifida, Toxoplasmosis, and Zika” – National CMV Foundation.
"Children with congenital cytomegalovirus (cCMV) infection are about 2.5 times more likely to be diagnosed with autism spectrum disorder (ASD) than their peers..." (AAP News, 2024). Congenital CMV can also cause deafblindness, cerebral palsy, development delays, and seizures.
CMV is often spread by young children in group care to their caregivers and to mothers who may become pregnant. Few women know how to reduce their chances of contracting CMV. Many rely on the ineffective use of diaper wipes to clean away saliva and urine and kiss their toddlers around the mouth and/or share food and drinks with them. “Almost all the babies that I see who have congenital CMV, there is an older toddler at home who is in daycare” (Dr. Jason Brophy in Ottawa Citizen, 2018).
In 2022, Senator John W. Mannion and Assemblymember Linda B. Rosenthal of New York State passed “Elizabeth’s Law” (S6287C/A7560), named in memory of my daughter. It “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding the impacts and dangers of congenital cytomegalovirus infection.” But, I have learned through other CMV advocates that the bill is not being implemented. Please help ensure S6287C is enforced, and sponsor:
Bill A3956/S5454: "Requires cytomegalovirus screening for every newborn..."
Bill A3074/S7662: "Requires reporting of positive cytomegalovirus results." Newborns "SHALL BE REFERRED TO A PEDIATRIC INFECTIOUS DISEASE SPECIALIST TO PERFORM A FULL EXAMINATION BEFORE SUCH NEWBORN REACHES FOUR WEEKS…SUCH EXAMINATION SHALL INCLUDE…
- MEASUREMENT OF HEAD CIRCUMFERENCE;HEAD SONOGRAM;BLOOD TESTS INCLUDING A COMPLETE BLOOD COUNT AND LIVER FUNCTION TESTS;EYE EXAM BY AN OPHTHALMOLOGIST; ANDHEARING EVALUATION BY AUDITORY BRAINSTEM RESPONSE.
2022: New York State passed “Elizabeth’s Law” (A7560), named in memory of my daughter. It “Requires the provision of informational materials [about cCMV] to child care providers and certain physicians and midwives regarding.” The NYS Dept. of Health created the following informational materials:
Regarding the 2026 CMV bills, A3956 and A3074, and why it's important to diagnose and treat congenital CMV at birth, includes this doctor's observation: “We've seen cases of missed clinically apparent cCMV during the NYS universal screening program. There have been some infants with features of cCMV that went unrecognized until the universal screen returned positive,” said Andrew Handel, MD, Stony Brook Children's Hospital, Co-Primary Investigator of PROACTIVE NYS.
Lisa Saunders, author of "Had I Known about CMV: From Shock to Law.
Lisa is on the Advisory Board (as Parent Advocate) for PROACTIVE NYS, a long-term follow-up study of young children with congenital CMV, and on the NY DeafBlind Collaborative Expert Advisory Council.
- Provide funding for hospitals and healthcare providers to test newborns for cCMV
- Support state agencies in setting clear standards for newborn testing
- Create grants to expand cCMV testing, strengthen data collection, and provide education and training
- Boost research at the National Institutes of Health for better screening, prevention, vaccines and treatment
Without universal CMV screening, the diagnosis of congenital CMV “may be overlooked for years, leading to developmental disorders without adequate treatment" (Andriesse et al., 2006).
Kara Russell of Penfield, NY, said, “My daughter, Lyla, is the perfect example of why all newborns should be tested for CMV and receive early intervention in their first critical months of life.” Lyla, born in 2018, "passed her newborn hearing screen, so she was never tested for CMV. Therefore, she never received the recommended regular hearing checks to catch the possibility of a progressive hearing loss. It wasn't until Lyla's five-year well check that we learned she had profound unilateral hearing loss -- that she was totally deaf in her left ear. We have no idea how long she was unable to hear accurately.” Kara is the New York National CMV Alliance Co-Chair (nationalcmvnys@gmail.com).
According to the CDC, "Hearing loss can affect a child's ability to develop communication, language and social skills. The earlier children with hearing loss start getting services, the more likely they are to reach their full potential."
Kristin Schuster of Canandaigua, NY, mom to Autumn (born 2015), said, "Unfortunately, my daughter wasn't diagnosed with congenital CMV until 18 months old – well after the opportunity had passed to receive antiviral treatment most effective when given between ages zero to six months.” Kristin is referring to “antiviral therapy with a 6-month course of valganciclovir, if implemented by 30 days of age, improved audiologic and neurodevelopmental outcomes for moderately-to-severely symptomatic infants with confirmed cCMV" (Schleiss).
MN and CT already have universal congenital CMV screening laws.
