Lisa Saunders with her daughter Elizabeth, born with a severely damaged brain from congenital CMV, in 1989. Elizabeth died during a seizure at the age of 16 in 2006.
"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).
Public health campaign needed so women of childbearing age can make decisions
to protect their pregnancies.
by Lisa Saunders
Women of childbearing age need to learn that the common virus, congenital CMV (cytomegalovirus), has recently been proven to be a cause of autism. The research of Megan Pesch, M.D., shows that "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). She is the lead on the study, “Autism Spectrum Disorder Diagnoses and Congenital Cytomegalovirus” (Pesch MH, et al. Pediatrics. May 29, 2024).
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” (Compassionate Conversations: “Congenital Cytomegalovirus,” 2024).
Megan Pesch, M.D., is a developmental behavioral pediatrician at University of Michigan Health C.S. Mott Children’s Hospital and her "daughter has both diagnoses [congenital CMV and autism]" (Uncovering the link between a common congenital viral infection and autism," Michigan Medicine, 2024).
Dr. Pesch told me, "I’d be happy to chat with anyone about the work, which probably just represents the tip of the iceberg. I am the proud mom of an autistic daughter, and while I adore who she is, it has also been powerful to know the root of her autism (CMV)."
Like Dr. Pesch, I, too, gave birth to a daughter with congenital CMV. And, both she and I should have known about CMV, its impact and how to prevent it because she was a medical doctor at the time of her pregnancy, and I was a licensed "in-home" child care provider, who, according to OSHA, should have been educated about my occupational hazard for CMV in my required training to become and stay licensed. According to OSHA, CMV is a "Recognized Hazard" and that all workers have the right to “receive information and training on job hazards, including all hazardous substances in your workplace.” (OSHA mandates that employees who render first aid must be trained in CMV because the virus, although usually spread through saliva and urine, is also a bloodborne pathogen. To "meet" some of us who worked as caregivers/teachers during our pregnancy, watch our CMV awareness event while listening to the song, "Had I Known [about CMV" Lyrics and Music by Debra Lynn Alt,"2021.)
Most women are not told about CMV at their first prenatal visit. Dr. Pesch is quoted in the Washington Post (2021) as saying that CMV education is not "part of standard prenatal care” and that medical training downplays the dangers of CMV.
Other reasons OB/GYNs don't routinely inform their patients about CMV:
- They don’t want to frighten, worry or “burden” patients (New York Times, 2016).
- CMV is a “silent virus”--"Infection is usually asymptomatic…and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed” (Cannon and Davis, 2005).
Robert F. Kennedy, Jr., founder of Children’s Health Defense, said at his swearing in as Secretary of Health and Human Services: "millions of mothers...simply want the tools – and the truth – so they can make informed decisions for their children" (HHS, 2025). Since he says he wants to learn the causes of autism, I hope he, and others who seek to protect children from preventable diseases, will learn about CMV. Mothers need to know about CMV before they get pregnant "so they can make informed decisions for their children." (The Children's Health Defense article, "The Special Ed Epidemic: Minimizing Risks — Protecting Our Children" mentions CMV as a cause of lower birth rate, which can lead to disabilities, but more information is needed on CMV, the #1 birth defects virus, so women can "make informed decisions for their children." )
For example, when the Infectious Diseases Society of America and Centers for Disease Control held a workshop in 1990, it was “agreed that certain child-rearing practices, such as the common use of day-care centers ...have changed the epidemiology of CMV in the United States and that the next decade may bring an increase in congenital CMV disease in certain groups" (Demmler, 1991).
Because CMV is often found in group child care centers where toddlers easily spread the virus to each other through their bodily fluids, the mothers of these toddlers are at greatest risk for contracting CMV: “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).
The Problem: “Despite CMV being the leading cause of birth defects and developmental delays in the United States (surpassing Down syndrome and neural tube defects), relatively few women in the US know about CMV and how it can affect pregnancy” (Contemporary OB/GYN, 2024).
The Solution: I believe there needs to be a public health campaign to teach how to avoid ingesting toddler saliva so that CMV prevention becomes common knowledge, like the "don't change kitty litter" rule aimed at preventing congenital toxoplasmosis. Unfortunately, women rely on easy-to-grab diaper wipes to clean off saliva and urine, but soap and water or hand sanitizer are needed to kill the CMV virus.
Since nearly half of pregnancies are unplanned, women need to know that they should not be sharing drinks with their toddlers or kissing them around the mouth, especially those in group care. "Improving preconception health and pregnancy outcomes will require...Changes in the knowledge and attitudes and behaviors related to reproductive health among both men and women ..." (Recommendations to Improve Preconception Health and Health Care, CDC). Other prenatal infections that can affect pregnancies can also be included in an awareness campaign geared to women of childbearing age.
Recommended resources include:
- CDC and congenital CMV
- National CMV Foundation flyer, "Are you pregnant."
CMV-educated women can better protect their pregnancies by making the following decisions regarding her toddler:
1) Should the mother:
A) Continue to share food and drinks with her toddler, kiss them on the lips, and wipe away saliva and urine with handy diaper wipes,
or, should the mother:
B) Get a new cup every time her toddler takes a sip from hers, kiss them on the check instead of the mouth, and use soap and water to wipe off saliva and urine instead of relying on ineffective diaper wipes to reduce her chances of contracting CMV.
2) Should the mother:
A) Enroll her toddler in group care for socialization, but risk her toddler bringing CMV into the home (yet this less worrisome if the mom follows infection control at home and/or if mom knows that she has antibodies to CMV);
or, should the mother:
B) Hire a nanny to lessen the risk of bringing CMV into the home.
If I had known about CMV before getting pregnant with my daughter, I would have:
- Gotten tested to see if I had any antibodies to CMV prior to getting pregnant.
- Gotten tested after suffering a miscarriage to see if CMV was the cause. If positive, I would have waited to get pregnant again.
- If blood work showed I had no antibodies for CMV, I would not have professionally cared for young children in my home nor volunteered in our church nursery. I would have only worked with older children.
- Regardless of CMV antibody status, I would never have shared food and cups with my toddler, nor let her kiss me on the lips.
Thank you in advance for informing women of childbearing age about CMV so they can make "informed decisions for their children."
Sincerely,
Lisa Saunders, author of memoir, "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. She produces CMV awareness content such as the flier, "CMV in New York (and OSHA)" and the Pac-B TV interview,“CytoMegaloVirus (CMV) - What Moms Wished They Knew.” She is the recipient of the National CMV Foundation Spirit of Advocacy Award (2023). In 2015, Lisa helped get a CMV testing law in Connecticut, and in 2022, a CMV education law, Elizabeth's Law, named in memory of her daughter, passed in New York. Despite Elizabeth's Law passing at the end of 2022, however, Lisa says that she still doesn't see an improvement in CMV awareness or evidence of Elizabeth's Law being implemented. "Can anyone help ensure women of childbearing age learn about CMV before they get pregnant?"
MORE INFORMATION
- "Up to 70% of children ages 1 to 3 years in group care settings excrete the virus.” On average, 30-40% of preschoolers in day care excrete CMV in their saliva and/or urine (American Academy of Pediatrics).
- In 2016, in the U.S., “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” (Thackeray and Magnusson, 2016).
- Between Aug. 2020-Dec. 2021, cases of congenital CMV “decreased to one baby in every 1,000 births…the combination of strict hygienic precautions, stay-at-home practices and…the closure of…group day care centers all resulted in reduced transmission…” (University of Minnesota).
In 2024, the STOP CMV Act 2024 (H.R.7542/S.3864) was introduced in Congress by Congressman Mike Lawler (NY), an attendee at my daughter Elizabeth's funeral (she died of a seizure in 2006) and U.S. Senator Richard Blumenthal (CT). It never went beyond committee.
New York
NY’s CMV Pilot Study:
In 2023, the Eunice Kennedy Shriver National Institute of Child Health and Human Development awarded the New York State Newborn Screening Program a contract "to provisionally add cCMV [congenital CMV] to its screening panel." The free testing was conducted during a baby's routine newborn screening. The goals of testing every newborn for cCMV for one year in New York were to learn:
- Could universal cCMV screening be successful nationwide?
- Could cCMV be detected by dried blood spot newborn screening? (It's more accurate, but more expensive, to detect it through saliva or urine.)
- Is catching and diagnosing cCMV at birth helpful? (Newborn Screening for Congenital Cytomegalovirus: A 1 Year Pilot, Sarah Bradley, MS, CGC, 2023). (See results of NYS Pilot Study below my signature).
Results
Of the 210,100 babies born in New York between 10/2023 – 9/2024, about 275 or so had "convincing evidence of congenital CMV," according to Andrew Handel, MD, Renaissance School of Medicine at Stony Brook University. “There have been some infants with features of cCMV that went unrecognized until the universal screen returned positive.” (Andrew Handel, MD, Stony Brook Children's Hospital, is Co-Primary Investigator of PROACTIVE NYS, a long-term follow-up study of young children with congenital CMV. The study is funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, a branch of the NIH.)
Racial Differences:
It's important to note that there are "Racial and Ethnic Differences in the Prevalence of Congenital Cytomegalovirus Infection" (Fowler, et al., 2018) and there are "Geographic Disparities in Cytomegalovirus Infection During Pregnancy" (Lantos, et. al., 2017). Congenital CMV “is 3 times more prevalent in black infants” according to Moderna, Inc. The Massachusetts CCMV Coalition posted the following video on Facebook: "Racial Disparities in Babies with cCMV.”
PUBLISHED CONGENITAL CMV COURT CASES
As an FYI, Australia educates childcare workers about CMV (see "Cytomegalovirus (CMV) in early childhood education and care services"). The following is a published account of what happened when a child care provider was not educated about her risk for CMV: In New South Wales, “a childcare worker and her severely disabled son were awarded $4.65 million. A Court of Appeal ruled that the child's disabilities resulted from the woman being infected with cytomegalovirus (CMV) at work (Hughes v SDN Children's services 2002)” (Queensland Government, Australia, retrieved from: https://www.worksafe.qld.gov.au/safety-and-prevention/hazards/hazardous-exposures/biological-hazards/cytomegalovirus-cmv-in-early-childhood-education-and-care-services ). Meridian Lawyers of Australia stated: "The allegations of negligence were that Sydney Day Nursery breached its duty of care to Linda ...by failing to warn her of the risks of CMV in circumstances where the centre knew or ought to have known of the risks of CMV to pregnant women..." Retrieved from: https://www.meridianlawyers.com.au/insights/infectious-diseases-child-care-what-about-staff-members/
Connecticut: The following is a CMV case published in Connecticut: Article, "Couple wins $37.6 million in Superior Court ruling against UConn Health for fertility procedure that left one child dead and her twin requiring lifetime medical attention", includes the comment, “The Center for Advanced Reproductive Services did not inform Monroe-Lynch and 'knowledgeably obtain her consent' about the risks associated with a CMV infection, according to the lawsuit” (Hartford Courant, 2021). The lawyers' website states, “The devastating consequences of contracting congenital CMV infection early in pregnancy are well-known in the medical community. There are simple safeguards in place to protect prospective parents and their children from this horrible disease” (Walsh Woodard LLC, 2021). The lawyers calculated the costs of raising and burying a child because of cCMV in the Connecticut case : http://civilinquiry.jud.ct.gov/DocumentInquiry/DocumentInquiry.aspx?DocumentNo=20972296
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