Holidays and loss because of congenital cytomegalovirus (CMV): Ways to fight the pain through legislation

 

The Empty Christmas Chair

Holidays without our daughter

by Lisa Saunders

 

Like many who have lost a loved one,  I tear up this time of year when I hear Bing Crosby sing “I'll Be Home for Christmas" on the car radio. I cry for my daughter, Elizabeth, born December 18, 1989.

Expecting Elizabeth, due to be born on Christmas Eve of that year, had been an exciting experience. But the moment she arrived on the 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed.”

The neonatologist 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." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV). Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them.

Why hadn’t my OB/GYN warned me about this? While I was pregnant with Elizabeth, I not only had a toddler of my own, but I also ran a licensed daycare center in my home. 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 later in life. 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. We were eventually able to move forward as a happy, "normal" family.

Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before  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 most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of 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 going for long car rides. She especially enjoyed going to 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."

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 had 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.”

As I prepare to celebrate yet another Christmas without her, it is always with some heartache that I bring out the holiday decorations from storage. Elizabeth used to love to sit on the couch with her big, once homeless old dog, Riley, and watch us decorate. (Their story is told in my memoir, Had I known about CMV: From Shock to Law). 

Now, I perform a new Christmas tradition. I carefully unfold the black and red checked shirt Elizabeth wore on her last day and hang it over an empty chair beside our fireplace. Although she can't be home for Christmas, I feel that she is my “Tiny Tim” who would say if she could, “God bless us, everyone!”

Although I miss Elizabeth, I’m glad she is free from suffering, glad she is safe in her new, Heavenly home. When my time comes, I will see  her again. My father wrote a fairytale that I found very helpful after Elizabeth died.  Folks can read it as a blog post or as a booklet, Surviving Loss: The Woodcutter's Tale. It includes comments on grieving from Julie Russell, a licensed clinical social worker, plus heart-felt illustrations by Elizabeth's aunt, Marianne Greiner. 

 

The Only Thing I Can Do for Elizabeth Now

PROPOSED LEGISLATION

Promoting recent and proposed legislation should improve parent, health care provider, and educator knowledge.  And as a result, better prevention and support for children and their families.  

Proposed National legislation: 

119th Congress (2025-2026). Stop CMV Act 2025. “To amend the Public Health Service Act to provide for congenital Cytomegalovirus screening of newborns.”

New York Representative Mike Lawler (R), sponsor of the Stop CMV Act, was a high school classmate of my older daughter and attended Elizabeth's funeral when he was in college (Elizabeth died Feb 9, 2006). "New Bill: Representative Michael Lawler introduces H.R. 5435: Stop CMV Act of 2025" (Quiver LegislationRadar) states: "The bill mandates that hospitals or health care entities caring for infants up to 21 days old conduct tests for congenital CMV. This is designed to identify CMV in newborns, which can lead to serious health issues if not detected early."

Contact your House/ and Senate representatives (members of Congress) and ask them to cosponsor the bill and join forces with the National CMV Foundation at: https://www.nationalcmv.org/cmv-research/blog/november-2025-(1)/support-the-stop-cmv-act

I currently live in upstate New York, so I am also advocating for the following New York State legislation:

1. Assembly Bill A3956/S5454: "Requires cytomegalovirus screening for every newborn..."

2. Assembly 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...”

The following New York Laws are already in place:

2022: “Elizabeth’s Law” (A7560), named in memory of my daughter. “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding...congenital cytomegalovirus infection."

2018: Targeted CMV testing law (A587C/S2816) “Requires urine polymerase chain reaction testing for cytomegalovirus of newborns with hearing impairments”.

Legislators, Please cosponsor cytomegalovirus (CMV) bills, A3956 and A3074

Dear New York CMV Awareness Advocates: 

1) Please contact your Assemblyman and NY Senator (visit this link to find them) and ask them to pass and possibly cosponsor CMV bills A3956 and A3074. These bills are still sitting in the health committee (committees will meet again in Jan. 2026). 

In summary: 

a. Assembly Bill A3956: "Requires cytomegalovirus screening for every newborn..."
b. Assembly Bill A3074: "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...”

To learn more about the bills, contact Nick Guile, Legislative Director, Assemblymember Linda B. Rosenthal, 518.455.5802, guilen@nyassembly.gov.

To see my letter of support, which answers some of the questions posed to me when I visited some health committee members in Albany, click here: Lisa Saunders New York Letter of Support for CMV bills, A3956 and A3074. My senator, Rachel May, became a sponsor of one of the bills, and my assemblyman, William Magnerelli, mailed me a letter stating, "Should A.3956 or A.3074 reach the Assembly floor for a vote next year, I will be in favor of their passing."  

I wrote to my legislators: 

Please  cosponsor  Assembly Bill A3956 and Assembly Bill A3074: 

 

Thank you again for cosponsoring Assembly Bill A7560B, named "Elizabeth's Law" in memory of my daughter, which passed in 2022. It requires providing congenital cytomegalovirus (CMV) educational materials to pregnant women and childcare providers. As you may recall, I was the mother of Elizabeth (see attached) born with brain damage from congenital CMV. When pregnant, I was unaware of CMV and how to prevent it – namely by carefully handling the saliva and urine of toddlers who, though otherwise healthy, may be excreting the virus in their bodily fluids. 

The American College of Obstetricians and Gynecologists states: “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 can cause autism (AAP News), is the #1 viral cause of birth defects, and is the leading non-heredity cause of hearing loss (CDC). CMV transmission between children is common in childcare centers. Individuals who work in childcare have an occupational risk for CMV (OSHA). “Knowledge and awareness of congenital cytomegalovirus among women is low [22%]” (Jeon et al., 2006).

In 2018, New York passed S2816, which requires testing newborns who fail their hearing screen for CMV, but it’s important to diagnose all cases at birth because cases are missed. "Babies with CMV who are caught early can access early treatment – which includes anything from anti-viral medication, to early intervention services, to long term hearing and vision monitoring. Since 90% of symptomatic babies are missed at birth, universal screening would help identify both symptomatic babies who may benefit from medication, and also asymptomatic babies who are at higher risk of hearing loss in childhood"--Dr. Megan Pesch, National CMV Foundation (2021). MN and CT have universal screening laws. 

In 2025, New York Assemblymember Linda B. Rosenthal filed two CMV bills (contact Nick Guile, Legislative Director, Assemblymember Linda B. Rosenthal, 518.455.5802, guilen@nyassembly.gov): 

1.     Assembly Bill A3956: "Requires cytomegalovirus screening for every newborn..."

2.     Assembly Bill A3074: "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...”

In April 2025, I met with some Health Committee members in Albany to educate them on the importance of diagnosing congenital CMV at birth because a newborn may pass their hearing test, but then experience a progressive hearing loss. "Hearing loss can affect a child’s ability to develop speech, language, and social skills. The earlier that children with hearing loss start getting services, the more likely they are to reach their full potential" (CDC). Without universal CMV screening, diagnosing congenital CMV “may be overlooked for years, leading to developmental disorders without adequate treatment" (Andriesse et al., 2006). Health committee members wanted the following information:

1) Antiviral treatment: “valganciclovir, if implemented by 30 days of age, improved audiologic and neurodevelopmental outcomes for moderately-to-severely symptomatic infants" (Schleiss, M., The Journal of Pediatrics, 2024). 

2) Savings: "savings of up to $37.97 per newborn screened were estimated" when all newborns are tested for congenital CMV” (Gantt, et al., JAMA Pediatrics, 2016). The report, “AN ACT RELATIVE TO NEWBORN SCREENING FOR CONGENITAL CYTOMEGALOVIRUS” (by BerryDunn for MA’s CMV bill),  analyzes costs.  

3) Racial Disparities: Congenital CMV “is 3 times more prevalent in black infants” (Moderna, Inc). See short video, “Racial Disparities in Babies with cCMV” (Massachusetts CCMV Coalition). 

4) Congenital Cytomegalovirus (cCMV) Infection pilot study: Of the 210,100 babies born in NYS between 10/2023 – 9/2024, about 275 or so had "convincing evidence of congenital CMV," said Andrew Handel, MD, Stony Brook Children's Hospital, Co-Primary Investigator of PROACTIVE NYS, a long-term follow-up study of young children with congenital CMV. “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.”

Organizations Supporting Universal CMV Screening:

• American Academy of Otolaryngology-Head and Neck Surgery:
  Strongly endorses universal newborn cCMV screening, stating it's necessary to best achieve the goals of early diagnosis and intervention. 

• National CMV Foundation:
  Advocates for universal newborn CMV screening and has been actively lobbying for it at the state and federal level. 

• American Academy of Audiology:
  Recommends early identification of cCMV through screening to allow for early diagnosis, intervention, and monitoring.

In 2022, New York State passed “Elizabeth’s Law” (A7560), named in memory of my daughter. It “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding...congenital cytomegalovirus infection." The NYS Dept. of Health created the following informational materials:

·  Protect Your Baby from Cytomegalovirus (CMV) (Publication #20172) (PDF)

·  Congenital Cytomegalovirus (CMV) Testing and Your Baby (Publication #20185) (PDF)

·  For Child Care Providers: Dear Provider Letter and Child Care Staff and Cytomegalovirus (CMV) #5061

In 2025, the New York State Assembly passed a resolution declaring June 2025 CMV Awareness Month: https://nyassembly.gov/leg/?default_fld=&leg_video=&bn=K00668&term=2025&Summary=Y&Actions=Y&Memo=Y&Text=Y 

Examples of New York families who would have benefited from universal congenital CMV testing: 

• Kristin Schuster of Canandaigua, mom to Autumn born in 2015 (Autumn failed her hearing screen, but this was before the 2018 targeted CMV testing law Assemblymember Rosenthal got passed), said, "Unfortunately, my daughter wasn't diagnosed with congenital CMV until 18 months old – well after the opportunity had passed to receive treatment most effective when given between ages zero to six months."  
• Kara Russell of Penfield: "Lyla, my youngest child, was born in 2018 and 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 in summer of 2023 that we learned she had profound unilateral hearing loss - that she was completely deaf in her left ear. We have no idea how long she was unable to hear accurately, even though she was receiving speech services since age four and had some coordination delays. 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." Lyla's pediatrician referred us to a pediatric audiologist who, after confirming the hearing loss, referred us to an ENT. In January 2024, the ENT said she wanted to test Lyla's newborn bloodspot for Congenital CMV. This was possible because of the pilot study that NYS was conducting at the time for CMV. She explained that I may have contracted CMV while pregnant, passing it to my unborn child. The test came back positive. I was told that Lyla might lose hearing in her other ear and that she would need to have her hearing tested every three months indefinitely because hearing loss from congenital CMV can be progressive. To say I was dumbfounded is an understatement. I had never heard of CMV despite having two older children and numerous prenatal visits. I was angry to learn that something I never knew existed can cause permanent disabilities and that I might have been able to prevent it if I had known the precautions to take. Since receiving her diagnosis, she has undergone surgery for a Cochlear Implant and we continue to monitor her hearing. This has greatly impacted her learning and she works hard every day to overcome all her delays and challenges. My goal is for every newborn to be screened for Congenital CMV. No mother should find out 5 years after the birth of her child, that they have.” Kara Russell is the New York National CMV Alliance Co-Chair.  Contact: nationalcmvnys@gmail.com

For more information about the CMV bills, contact Nick Guile, Legislative Director, Assemblymember Linda B. Rosenthal, 518.455.5802, guilen@nyassembly.gov. Thank you in advance for your help!

Sincerely,

Lisa Saunders, LisaSaunders42@gmail.com

Lisa Saunders is the author of Had I Known about CMV: From Shock to Law. She 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).

*Studies on Racial and Ethnic Differences: 

1) Racial and Ethnic Differences in the Prevalence of Congenital Cytomegalovirus Infection (Fowler et. al, 2018);  “Significant racial and ethnic differences exist in the prevalence of cCMV, even after adjusting for socioeconomic status and maternal age. Although once infected, the newborn disease and rates of hearing loss in infants are similar with respect to race and ethnicity.”

2) Geographic Disparities in Cytomegalovirus Infection During Pregnancy (Lantos et. al, 2017). “We found a high prevalence of CMV seropositivity in urban low-income neighborhoods among pregnant women, particularly among racial and ethnic minorities.”

3) Updated National and State-Specific Prevalence of Congenital Cytomegalovirus Infection, United States, 2018-2022 (Lutz et al., 2024). It looks at congenital CMV (cCMV) rates by racial/ethnic group and geography and includes some colorful US maps that drive home the disparities. It concludes:  “States with larger proportions of racial and ethnic minorities had higher estimated prevalence of cCMV infection compared to states with larger proportions of White persons.”

Regarding child care providers

I have concerns about child care policy makers and directors not realizing that their workers who are required to provide first aid are supposed to be trained in CMV -- not just receive educational materials on it. From OSHA: “Child care workers who are designated as responsible for rendering first aid” (published "Letter of Interpretation," 1992) are covered by OSHA’s Bloodborne Pathogens Standard, which “imposes requirements on employers of workers who may be exposed to blood or other potentially infectious materials such as certain tissues and body fluids.” Two published Letters of Interpretation make it clear that childcare providers, if required to render first aid, are covered by the Bloodborne Pathogens Standard: 

• https://www.osha.gov/laws-regs/standardinterpretations/1992-07-21

• https://www.osha.gov/laws-regs/standardinterpretations/1999-10-21