"Stop CMV Act" Introduced in Congress! NY RESIDENTS: Write U.S. Senators/Congressmen to support Stop CMV Act AND NY Senators/Assemblymember to support universal CMV testing bill, A07997/S07659

Dear New York State Residents:

If you want to see an end to the leading viral cause of birth defects, there are currently two bills that need cosponsors. You can help find these cosponsors by contacting your New York assemblymembers and senators PLUS your Congressman and the two U.S. Senators representing New York.

1. STOP CMV Act 2024 introduced at the federal level: S.3864 /H.R.7542 (pdfs of bills: House and Senate)
2. New York's universal CMV testing bill, A07997/S07659, which "requires cytomegalovirus screening for every newborn..." The final wording of that bill and its effective date will depend, I believe, on the pilot study that is currently underway in New York.

1) Contact your congressman and U.S Senators and ask them to cosponsor the Stop CMV Act. (letter templates from the National CMV Foundation below, and/or you can use excerpts of my letter with info specific to NY). 

Find your congressman in the House of Representatives by entering your zip code in the window on the top right corner of this web page: https://www.house.gov/. Call their local office so you can find the best place to email your support, or you can try their established link for emails. Congressman Mike Lawler of the 17th District is the House of Representative sponsor. He attended my daughter Elizabeth's funeral services in 2006. His district includes all or parts of Rockland, Westchester, Putnam, and Dutchess counties. I called his Pearl River office to thank him at: 845-201-2060. 

Your New York Senators: 

Gillibrand, Kirsten, 202-224-4451, Letter through: https://www.gillibrand.senate.gov/contact/email-me/

Schumer, Charles, 202-224-6542, Letter through: https://www.schumer.senate.gov/contact/message-chuck

Letter templates from National CMV Foundation (or see mine below):

House Letter Template
Senate Letter Template

MY SAMPLE LETTER TO MY CONGRESSMAN SHOWS THE NEW YORK ANGLE (I sent through the website contact link, but also called his local office to get a more direct email):

Dear Congressman  Brandon Williams,

Please cosponsor Stop CMV Act of 2024: S.3864 /H.R.7542 (pdfs of bills: House and Senate).

Congenital Cytomegalovirus (CMV) is the most common infectious cause of birth defects and the leading non-genetic cause of hearing loss in infants. “One in two hundred babies are born with congenital CMV, and 20% exhibit symptoms or long-term health problems. It is crucial that Congress invest in early intervention services to overcome these startling statistics,” said Congressman Lawler. “I’m proud to join my colleagues in introducing the bipartisan, bicameral STOP CMV Act. This legislation will improve access to screenings and invest in the critical research necessary to ensure children born with CMV grow up to live healthy lives” (Press Release, Mike Lawler, March 6, 2024) 

I am on the Advisory Board (as a Parent Advocate) for  PROACTIVE NYS, the long-term follow-up study of infants who screen positive for congenital CMV in New York (contact information for the doctors involved with that below my signature).

Here is some recent New York media coverage of the Stop CMV Act where I was quoted:

1. CNY Central: Baldwinsville mother applauds federal push to protect babies from CMV - CNY Central (Megan Coleman, March 8,2024)
2. The Citizen: “Bill in Congress aims to boost CMV newborn screening, research” (Robert Harding, Mar 8, 2024) 

Our daughter Elizabeth was born with profound brain damage because I contracted CMV just prior to or early into my pregnancy in 1989. As a professional child care provider and mother of a toddler, I was at higher risk for CMV yet was never told to reduce "contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC). My efforts on a recently passed New York CMV law (named "Elizabeth's Law" in memory of my daughter) were featured in USA TODAY's article, "This virus is a leading cause birth defects. Why isn't it screened more?" (Oct. 2, 2023), by Eduardo Cuevas. Reporter Cuevas also included the news that New York "joined a growing number of states to universally screen early for CMV, prompted, in large part, by parents whose children have experienced health effects from the virus." Effective October 2, 2023, "New York begins a one-year pilot [study], testing all newborns for CMV using the routine method of a heel prick that leaves a dried blood spot on filter paper...With its pilot program, New York is the largest state to enact CMV screening. It's available to about 220,000 babies born annually in the state. State Rep. Linda Rosenthal, a Manhattan Democrat who sponsored Elizabeth's Law [John W. Mannion, Senate sponsor], now has a bill before the Legislature [A07997/S07659] following New York’s pilot, that would make universal screening permanent. It expands on a 2018 law Rosenthal sponsored that mandates hospitals test babies for CMV if they fail a hearing screening. The plan is to compare babies who failed a hearing screening with those who tested positive for CMV to babies who did not fail hearing tests, said Dr. Michele Caggana, director of the New York State Department of Health Newborn Screening Program...If CMV is found within the first 24 to 36 hours of birth, officials can connect families with primary care pediatricians and specialists to monitor and address neurologic, hearing and vision outcomes if problems develop, Caggana said."

The STOP CMV bill introduced at the federal level will increase the conversation about the problem of CMV, which I believe will help advance New York's A07997/S07659, which "requires cytomegalovirus screening for every newborn" in Albany.

The bipartisan Stop CMV Act authorizes funding to states for hospitals and other healthcare entities caring for infants to administer congenital CMV tests and encourages state healthcare agencies to prescribe standards and procedures for the administration of these tests. The bill also creates grant programs to provide funds to administer CMV tests, improve CMV data collection systems, and assist in CMV education and training.  Lastly, the bill advances National Institutes of Health research for screening techniques, diagnostics, prevention, vaccines, and treatments.  

With your help, we can reduce the impact of cCMV! 

Please cosponsor this important bipartisan legislation today! 

Sincerely,

Lisa Saunders

Baldwinsville, NY 13027
845-222-8593, LisaSaunders42@gmail.com

2) Contact your New York state senators and assemblymembers and ask them to cosponsor New York's universal CMV testing bill, A07997/S07659, which "requires cytomegalovirus screening for every newborn..." 

• Find your Assemblymember: https://nyassembly.gov/mem/search/
• Find your  New York Senator: https://www.nysenate.gov/find-my-senator

MY SAMPLE LETTER TO MY ASSEMBLYMEMBER

Dear Assemblymember William B. Magnarelli,

My name is Lisa Saunders and I live in your district on 216 Peakwood Lane in the Town of Van Buren. Thank you again for co-sponsoring Elizabeth’s Law, named in memory of my daughter (it passed in 2022), requiring the provision of CMV educational materials to child care providers and pregnant women. The new law was featured recently in USA TODAY: "This virus is a leading cause birth defects. Why isn't it screened more?" (2023).

Because it's important to test every newborn for CMV, I am asking that you now co-sponsor  A07997/S07659, which "Requires cytomegalovirus screening for every newborn by administration of a urine polymerase chain reaction (PCR) test." Introduced on Sept. 20, 2023,  A07997/S07659 is an amendment to the 2018 CMV law, requiring only newborns who fail the hearing screen be tested for CMV. 

According to Crain's New York Business, "State Sen. John Mannion, who sponsors [this] bill that would make the screening permanent, said early diagnosis and treatment are key in mitigating long-term health problems for babies, emphasizing the need for screening. According to Assemblywoman Linda Rosenthal, who also sponsors the bill, further action will depend on the results of the pilot (Sept. 28, 2023).  

According to Joseph Domachowske, MD, professor of pediatrics, microbiology and immunology with a specialty in pediatric infectious diseases at SUNY Upstate Medical University, "not all congenitally infected babies have hearing loss at birth, and most babies born with CMV can be asymptomatic, so the best way to diagnose CMV early involves prevention education and better forms of testing. 'Hearing tests are somewhat helpful, but it’s not the best answer, and it’s not the best way to handle this,' Domachowske said. “What’s coming down the pike is adding CMV to universal newborn screening panels, and having that test done will be very specific for CMV” (Post-Standard, "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter", 2023).

Senator Mannion and Assemblymember Rosenthal may ask that universal testing become permanent practice in New York after the results are in from the pilot study (see below), and they will discuss further if it's best to require blood or urine testing.

Current Pilot Study in New York:

"The New York State Department of Health announced that effective October 2, 2023, all babies will be screened for Congenital Cytomegalovirus (cCMV), making New York the second state in the nation, after Minnesota, to screen all babies for the virus" (NY Dept. of Health, Sept. 29, 2023). The NY Newborn Screening Program is provisionally adding congenital CMV (cCMV) to its "screening panel for a period of one year" using dried blood spot (DBS) (NY Dept. Health, Wadsworth Center, Sept 1, 2023).  

 

According to the September 8, 2023, webinar held by New York State Newborn Screening Program, the goal of testing every newborn for cCMV for one year is to help answer questions about whether or not universal cCMV screening can be successful nationwide. They need to see if cCMV can be detected by dried blood spot newborn screening and "Is catching and diagnosing cCMV at birth helpful?" It is believed that "Screening in a diverse population like New York will help determine true incidence" (Newborn Screening for Congenital Cytomegalovirus:  A 1 Year Pilot, Sarah Bradley, MS, CGC, 2023).

According to USA Today, "With its pilot program, New York is the largest state to enact CMV screening. It's available to about 220,000 babies born annually in the state. State Rep. Linda Rosenthal, a Manhattan Democrat who sponsored Elizabeth's Law, now has a bill before the Legislature following New York’s pilot, that would make universal screening permanent. It expands on a 2018 law Rosenthal sponsored that mandates hospitals test babies for CMV if they fail a hearing screening. The plan is to compare babies who failed a hearing screening with those who tested positive for CMV to babies who did not fail hearing tests, said Dr. Michele Caggana, director of the New York State Department of Health Newborn Screening Program." (USA Today, Oct 2, 2023)

CMV educational materials, some created by the New York Department of Health can be found here under Additional Resources and Family Brochures (https://www.wadsworth.org/programs/newborn/screening/additional-testing). 

To learn more about New York and CMV, contact  the sponsors of A07997/S07659 at: 

• Assemblymember Linda B. Rosenthal’s office at 518/455-5802, or email Nick Guile, Legislative Director for Assemblymember Rosenthal, at guilen@nyassembly.gov
• Senator John W. Mannion's office at 518-455-2954, or email Noah Rohde, Legislative Director for Senator Mannion, at noah@senatormannion.com

In 2022, Minnesota became the first state to pass legislation requiring every newborn be tested for CMV.

Sincerely, 

Lisa Saunders, CMV Parent Advocate

Advisory Board, PROACTIVE NYS (the NIH-funded follow-up study of young children with congenital CMV).

Baldwinsville, NY 13027

LisaSaunders42@gmail.com

Doctor contacts:

Doctors who helped provide backup information on the 2022 CMV  "Elizabeth's Law" (I can give you phone numbers if you need them):

Dr. Sallie Permar, M.D. PhD., Weill Cornell Pediatrician-in-Chief, Board member of the National CMV Program,  sap4017@med.cornell.edu

Sunil K. Sood, M.D., Chair of Pediatrics, South Shore University Hospital, Attending Physician, Infectious Diseases, Cohen Children's Medical Center and Professor, Zucker School of Medicine at Hofstra/Northwell, SSood@northwell.edu

To learn more about  PROACTIVE NYS, the NIH-funded long-term follow-up study of young children with congenital CMV (cCMV), visit: https://www.proactivenys.org/ or contact:

Andrew S. Handel, MD, FAAP

Assistant Professor of Pediatrics

Division of Infectious Diseases

Stony Brook Children's Hospital

Renaissance School of Medicine at Stony Brook University

Office: 631.444.7692

Andrew.Handel@stonybrookmedicine.edu

Sharon Nachman MD

Distinguished Professor

Department of Pediatrics

Associate Dean for Research

Renaissance School of Medicine

SUNY Stony Brook

Sharon.nachman@stonybrookmedicine.edu

MY NOTES:

1. S.3864 — 118th Congress (2023-2024)

Stop CMV Act of 2024Sponsor: Blumenthal, Richard [Sen.-D-CT] (Introduced 03/05/2024) Cosponsors: (2)Committees: Senate - Health, Education, Labor, and PensionsLatest Action: Senate - 03/05/2024 Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (All Actions)
1. H.R.7542 — 118th Congress (2023-2024)To amend the Public Health Service Act to provide for congenital Cytomegalovirus screening of newborns.Sponsor: Lawler, Michael [Rep.-R-NY-17] (Introduced 03/05/2024) Cosponsors: (1)Committees: House - Energy and CommerceLatest Action: House - 03/05/2024 Referred to the House Committee on Energy and Commerce. (All Actions)

Brandi Hurtubise, New York National CMV Alliance Chair, is hosting a NY Strides for CMV event. It will take place at Knox Farms on June 29, 2024, in honor of June CMV Awareness Month. This may be the link for where the event is being held, but I'm not sure: Knox Farm State Park, East Aurora, NY. For more info, contact Brandi at:nationalcmvny@gmail.com)

Kara Russell of Penfield (near Rochester) said, "My daughter 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, my youngest child, was born in 2018 and passed her newborn hearing screen, so she wasn't 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 2023 that we learned she had profound hearing loss - that she was totally 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" (CDC/HearingLossinChildren). 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 blood spot for Congenital 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 she needed 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. Now, Lyla's school is conducting cognitive testing as they suspect a delay. My goal is for every newborn to be screened for congenital CMV and for CMV education to be presented during prenatal visits since a woman may be able to reduce her chances of contracting it."

Rocks painted by Tabitha Rodenhaus in honor of daughter Kaia. Jim and I leave them along the Erie Canalway Trail between Albany and Buffalo.

Kristin Schuster of Canandaigua, 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 treatment most effective when given between ages zero to six months. She was not diagnosed with congenital CMV at birth despite failing her newborn hearing screen multiple times, having 'low for gestational age' birth weight, and microcephaly. Autumn received her first pair of hearing aids for bilateral severe hearing loss at 4 months old, glasses for vision impairment at 5 months, an MRI showing brain calcifications, very significant global delays, and received a g-tube for feeding at 15 months of age. Up until then, all of the doctors and specialists we were seeing claimed that her diagnoses were 'unrelated.' It wasn't until I read an article about CMV posted in a Facebook group for Rochester parents of children with hearing loss that I had that 'aha' moment that congenital CMV must be the root cause of all of my daughter's difficulties. When I requested to have her tested for CMV, I was initially given pushback, but when I demanded her newborn blood spot be tested, her neurologist arranged to have it tested from where it was banked in Albany. When the test came back, we finally had our confirmed diagnosis of congenital CMV--too late for her to receive treatment in the optimal first months of life."  

Kristin, myself and Brandi Hurtubise, New York National CMV Foundation Alliance Chair and mother of Samantha, were already featured together in the article, "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter", The Post-Standard, Vallelunga, E., Jan.1, 2023, Syracuse.com.

LisaSaunders42@gmail.com

"Our daughter Elizabeth was born with profound brain damage because I contracted CMV just prior to or during my pregnancy in 1989. As a professional child care provider and mother of a toddler, I was at higher risk for CMV, yet was never educated about this risk or how to prevent contracting CMV.  Elizabeth's disabilities might have been prevented had I known to reduce "contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC.gov/CMV). My goal is that all women of childbearing age across the U.S. will know how to prevent CMV before becoming pregnant." In 2022, Elizabeth’s Law was passed in New York requiring the provision of CMV educational materials to child care providers and pregnant women. (USA TODAY: "This virus is a leading cause birth defects. Why isn't it screened more?", 2023).

Honoring the memory of your child

The empty seat symbolizes my daughter's absence at Christmas. (Lisa Saunders)

I know several mothers who are missing a child this holiday season. Hopefully, they have found - or will find - a way to honor their child's memory and a reason to move forward until they meet again. 

One mom, Marti Perhach, just told me her holiday tradition: "We have a little stocking for Rose and a little tree we put up for her every year." Rose, Marti's fourth child, was stillborn due to group B strep (GBS). Marti has made it her mission to help prevent this from happening to other families. "Although there are many ways to constructively work through grief and honor the memory of a loved one, what helped take the edge off the pain for me has been to advocate for awareness and prevention of group B strep disease, the cause of Rose's death in utero." Marti Perhach is the co-founder of Group B Strep International (GBSI) and contributed significantly to the collaborative efforts to successfully campaign for universal screening for GBS. 

My daughter Elizabeth would have been 34 this Christmas 2023 if she hadn't been born with congenital cytomegalovirus (CMV). The moment she arrived on December 18, 1989, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed. "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." Pregnant women who care for young children are at a higher risk for catching CMV because preschoolers are the majority of carriers. Just prior to or during pregnancy, women need to be careful not to kiss young children on the mouth or share food with them. I felt sick at what my lack of knowledge had done to my little girl.

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 to 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, the Book of Psalms, and inspiring movies such as "It's a Wonderful Life," where character George Bailey, contemplating suicide, prayed, "Dear Father in Heaven …show me the way. I’m at the end of my rope…show me the way, oh God.”

Sixteen 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 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 especially enjoyed 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 we prepare to celebrate another Christmas without Elizabeth, I no longer feel heartache when I bring the decorations out of storage. I smile remembering how Elizabeth used to love to sit on the couch with her lazy, old dog and watch us decorate. 

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 beside the 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!” 

Like my friend Marti, I, too, found a way to take the edge off the pain of missing her. Since Elizabeth no longer needed my care, the only thing I can do for her now is to care for those not yet born—to prevent them from suffering as Elizabeth did. I do that by speaking and writing about congenital CMV prevention. Elizabeth's disabilities might have been prevented had I known to reduce "contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC.gov/CMV). In 2022, “Elizabeth’s Law,” was passed in New York requiring the provision of CMV educational materials to child care providers and pregnant women (Baldwinsville couple's advocacy inspires legislation for CMV awareness, 2023). 

My ultimate dream is that all women of childbearing age will learn about CMV prevention before getting pregnant since half of pregnancies are unplanned. One way I continue to raise awareness is by walking across the State of New York leaving behind "Stop CMV" rocks with CMV prevention tips painted on the back by another mom, Tabitha Rodenhaus. (Learn more from the National CMV Foundation, founded by other moms). 

Since commencing our trek in 2020, Jim and I have walked over 2/3 across New York (242 miles) on the 360-mile Erie Canalway Trail between Albany and Buffalo. We tackle new sections of the trail about twice a month – in all kinds of weather. We’ve been chased by mosquitoes, biting flies and lightning. We’ve endured torrential downpours, blinding snow, chafing underwear, aching feet, and swollen knees. We’ve faced snakes, floods, ice, and a smelly, dead opossum. You can join our adventure by clicking on my travel video, “Hiking the Erie Canalway Trail, Vote on 7 Wonders, Stop CMV,” which features why the Canal was considered the 8th Wonder of the World, what it's like to walk, rather than bike, the Trail (even Santa bikes the Trail!), and where my Aunt Rebecca’s body was found in the canal in an apparent suicide. The bridge she likely drove into the canal from reminds me of the bridge over the canal in Seneca Falls, New York, where a woman’s 1917 suicide attempt is noted on a plaque honoring the man who drowned while successfully saving her. 

Seneca Falls is believed to be the inspiration for Bedford Falls in the movie, "It's a Wonderful Life." Much of the memorabilia featured in the It’s a Wonderful Life Museum in Seneca Falls was donated by a mother, Karolyn Grimes, the actress who played little Zuzu Bailey. She wanted to honor the memory of her son who committed suicide at 18. "Grimes says the optimistic message of It’s a Wonderful Life, which she helps to spread through personal appearances, resonates because it acknowledges life’s hardships" (People.com). Every December, Seneca Falls hosts an annual "It's A Wonderful Life Festival." Last year, I met actress Karolyn Grimes and was touched by how compassionately she listened to our story about Elizabeth. 

Jim and I met actress Karolyn Grimes, who played little Zuzu Bailey, at the It's a Wonderful Life Festival in 2022.

Another way I fondly recall Elizabeth's short life is to remember I will see her again someday. My father captured that truth when he wrote the fairy tale, "The Woodcutter’s Tale" (you can read this very short story on my blog by clicking here).

I find this Scripture motivating for moving forward after the death of a child: "But now he is dead. Why should I fast? Can I bring him back again? I shall go to him, but he will not return to me” (2 Samuel 12:23).

After Losing a Child: My Christmas wish for others

My daughter Elizabeth, born December 18, 1989, would have been 34 this Christmas 2023 if she hadn't been born with congenital cytomegalovirus (CMV). I know there are a lot of other mothers out there who are missing a child this Christmas. Hopefully, they have found a reason to move forward. 

Expecting Elizabeth, due to be born on Christmas Eve of 1989, 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 has microcephaly--her 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 I heard of CMV before and the precautions to take? 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 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 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 we prepare to celebrate another Christmas without Elizabeth, I no longer feel  heartache when I bring the decorations out of storage. I smile remembering how Elizabeth used to love to sit on the couch with her lazy old dog Riley, and watch us decorate. 

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 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!”

I’m glad Elizabeth is free from suffering, glad she is safe in her new, Heavenly home. I knew I would need reminders of where Elizabeth was and what she is enjoying, so I had engravers etch on the back of her headstone that she is dwelling in the house of the Lord where: "...the lame leap like a deer and the mute tongue shout for joy" (Isaiah 35:6). Many times when I was lost in despair those first few years, I visited her stone, hugged it, and left somewhat cheered as I pondered her new life. When my time comes, I will see Elizabeth again. 

My father wrote a fairy tale that I found very helpful after Elizabeth died, The Woodcutter’s Tale. To read it on my blog, click here,  or download the free pdf with its color images and comments by a therapist on grief by clicking here.*  

  The Only Thing I Can Do for Elizabeth Now

Since Elizabeth no longer needs my care, the only thing I can do for her now is to care for those not yet born—to prevent them from suffering as Elizabeth did. I do that by speaking and writing about congenital CMV prevention. 

After presenting the story of Elizabeth's life at the first international Congenital CMV conference held in the U.S, at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, in 2008, scientists from all over the world approached to thank me for inspiring them to continue their work. Mothers, on the other hand, pushed their children towards me in wheelchairs and asked, “Why didn’t my OB/GYN tell me how to prevent this?” One mother even asked, "Learning what you did, why didn't you do all you could to shout it from the rooftops?"

Until OB/GYNs make CMV prevention a standard practice of care, I'm trying to "shout it from the rooftops" through my writing, speaking engagements, and contacting agencies I hope will help. Thankfully, there is a large army of CMV parents and medical professionals doing the same thing. 

Please share the following with women of childbearing age: Elizabeth's disabilities might have been prevented had I known to reduce "contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC.gov/CMV). 

In 2022, “Elizabeth’s Law,” was passed in New York requiring the provision of CMV educational materials to child care providers and pregnant women (USA TODAY: "This virus is a leading cause birth defects. Why isn't it screened more?", 2023).

Thank you for reading my story.

Sincerely,

Lisa Saunders

LisaSaunders42@gmail.com

AuthorLisaSaunders.com

My history and CMV books 

USA Today - Women's Rights Issue Gets National Publicity. Help promote a "Woman's Right to Know About #1 Birth Defects Virus, cytomegalovirus (CMV)" and find co-sponsor to Blumenthal's "Stop CMV Act of 2023"

I've been working on a women's rights issue for decades, but only recently has it been getting the major publicity it deserves. In USA Today, in the front page article,  "This virus is a leading cause birth defects. Why isn't it screened more?"  the reporter included the following information about how we're trying to build on the women's rights movement that started in Seneca Falls, NY: 

"Saunders, whose daughter contracted the disease in the 80s, has continued to advocate for CMV awareness as a women’s rights issue. In the last three years, she and her husband Jim, 65, have begun walking the entire Erie Canalway that runs across New York. They hope to complete it by the canal's bicentennial anniversary, in 2025. The 363-mile waterway allowed American commerce to expand. It also passes near several historic sites from the suffragist movement, including Seneca Falls, the site of the pioneering 1848 women’s rights convention. Saunders said she hopes that women find out about CMV before they’re pregnant, during their childbearing years. She wants prevention and newborn screening for the infection to become the standard of care, and, more than anything, she hopes knowledge about CMV to be commonplace."

Congress established the Erie Canalway National Heritage Corridor in 2000 because it “facilitated the movement of ideas …like…women's rights…across upstate New York to the rest of the country”(106th Congress). We are leaving #Stop CMV rocks along the Erie Canalway Trail to comply with Congress' recommendation that "more effort be taken to counsel women of childbearing age of the effect this virus can have on their children" (112th Congress, 2011). 

Our daughter Elizabeth was born with brain damage in 1989 because I contracted CMV just prior to or during my pregnancy. I might have prevented her disabilities had I known to lessen my "risk of getting CMV by reducing contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC.gov/CMV). In 2022, “Elizabeth’s Law,” named in memory of our daughter, was passed in New York requiring the provision of CMV educational materials to child care providers and pregnant women. 

Many women across the country have already signed the "Declaration of Women's CMV Rights and Sentiments," which is based on the 1848 Women's Rights "Declaration of Sentiments" signed in Seneca Falls. 

The following are some of the reasons women are not routinely educated about CMV:

1) Doctors don’t want to frighten, worry or burden” patients: New York Times: "Guidelines from ACOG suggest that pregnant women will find CMV prevention 'impractical and burdensome,' especially if they are told not to kiss their toddlers on the mouth — a possible route of transmission.” (Saint Louis, 2016). 

2) Fearmongering: "Nearly half of surveyed healthcare professionals (HCPs) hesitate to discuss CMV, citing concerns of fearmongering among their patients."(Panther, MD, "Moderna Addresses Awareness Gap, Builds Community Trust To Boost CMV Trial Recruitment," Sept. 20,2023)

3) Medical training downplays the dangers. Pediatrician Megan Pesch, M.D., of the University of Michigan’s C.S. Mott Children’s Hospital, whose third daughter was born with congenital CMV and  a progressive hearing loss, said, "I went back and looked at my notes at what I’d learned in residency and medical school, and what we learned was so rudimentary and basic...I waver between feeling guilty and feeling furious. I have spent — how many years of my life in developmental pediatrics? — how could I not have known?”(Washington Post, "How a common, often harmless virus called cytomegalovirus can damage a fetus," May 15, 2021.)

4) Caregivers/Teachers at greater risk, but there are no federal laws governing CMV education policies: Although U.S. workers have the right to “receive information and training about hazards” (Occupational Safety and Health Act of 1970), the Department of Labor states, "Education and training requirements vary by setting, state, and employer."

5)"Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed” (Cannon and Davis, 2005).

There is still a lot to do to raise awareness among women of childbearing age so they can know about CMV before getting pregnant. The song, "Had I known (about CMV)," by Debra Lynn Alt, expresses how many of us mothers feel. 

Perhaps you are able to help raise awareness of CMV through sharing this message? 

And/or, perhaps you can help find a Republican U.S. Senator to co-sponsor "Stop CMV Act of 2023"?  The USA Today article announced, "In June, U.S. Sen. Richard Blumenthal, D-Conn., announced he would introduce the Stop CMV Act of 2023 to incentivize hospitals and health care providers to screen for CMV in newborns’ first three weeks. The bill has yet to be formally introduced in Congress. Blumenthal is seeking a Republican co-sponsor. 'Congenital CMV is a major public health challenge and, unfortunately, parents are almost totally unaware of it and providers aren’t able to detect it as often as they should,' Blumenthal said in a statement" (USA TODAY, "This virus is a leading cause birth defects. Why isn't it screened more?", Cuevas, E. Oct. 2, 2023).

Perhaps you have a connection to one of these Republican U.S. Senators found at: https://www.republicanleader.senate.gov/senate-resources/republican-senators

Sincerely,

Lisa Saunders

AuthorLisaSaunders.com

LisaSaunders42@gmail.com

The USA Today article made it into Yahoo news (see newsfeed below)

Democrat and Chronicle

CMV New from NY: All newborns tested (DBS) for 1 year, bill submitted for universal screening (PCR), and new travel video features moms raising awareness across the state and song, "Had I Known (about CMV)"

#Stop CMV rocks painted by Kaia's mom, Tabitha Rodenhaus of Kenmore (near Buffalo).

1) "The New York State Department of Health announced that effective October 2, 2023, all babies will be screened for Congenital Cytomegalovirus (cCMV), making New York the second state in the nation, after Minnesota, to screen all babies for the virus" (NY Dept. of Health, Sept. 29, 2023). The NY Newborn Screening Program is provisionally adding congenital CMV (cCMV) to its "screening panel for a period of one year" using dried blood spot (DBS) (NY Dept. Health, Wadsworth Center, Sept 1, 2023).  More information below my signature. 

2) On Sept. 20, 2023, the New York Assembly and Senate introduced bill A07997/S07659: "Requires cytomegalovirus screening for every newborn by administration of a urine polymerase chain reaction (PCR) test."  "State Sen. John Mannion, who sponsors [this] bill that would make the screening permanent, said early diagnosis and treatment are key in mitigating long-term health problems for babies, emphasizing the need for screening. According to Assemblywoman Linda Rosenthal, who also sponsors the bill, further action will depend on the results of the pilot. (Crain's New York Business, Sept. 28, 2023).  (New York already has laws regarding targeted CMV testing and the provision of prevention education materials to pregnant women and child care providers.)

3) My new travel video about our 360-mile walk across New York State to raise CMV awareness is now airing. "Hiking the Erie Canalway Trail, Vote on 7 Wonders, Stop CMV" showcases the work of New York parents, National CMV Foundation, and others. The video reminds the public that Congress established the Erie Canalway National Heritage Corridor in 2000 because it “facilitated the movement of ideas …like…women's rights…across upstate New York to the rest of the country”(Congressional Bills 106th Congress). We are leaving #Stop CMV rocks along the Trail to comply with Congress' recommendation that "more effort be taken to counsel women of childbearing age of the effect this virus can have on their children" (S.Res.215 — 112th Congress, 2011). 

Many women across the country have already signed the "Declaration of Women's CMV Rights and Sentiments," which is based on the 1848 Women's Rights "Declaration of Sentiments" signed in Seneca Falls. The song, "Had I known (about CMV)," expresses how many of us feel. 

There is still a lot to do to raise awareness among women of childbearing age so they can know about CMV before getting pregnant. So, we keep putting one foot in front of the other.

More information about the pilot study below my signature.

Sincerely,

Lisa Saunders

www.AuthorLisaSaunders.com

LisaSaunders42@gmail.com

New York Stop CMV

How CMV affected me: Our daughter Elizabeth was born with brain damage in 1989 because I contracted CMV just prior to or during my pregnancy. I might have prevented her disabilities had I known to lessen my "risk of getting CMV by reducing contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC.gov/CMV). In 2022, “Elizabeth’s Law,” named in memory of our daughter, was passed in New York requiring the provision of CMV educational materials to child care providers and pregnant women. 

New York's Congenital Cytomegalovirus (cCMV) Screening 

(https://www.wadsworth.org/news/congenital-cytomegalovirus-ccmv-screening).

According to the September 8, 2023, webinar held by New York State Newborn Screening Program, the goal of testing every newborn for cCMV for one year is to help answer questions about whether or not universal cCMV screening can be successful nationwide. They need to see if cCMV can be detected by dried blood spot newborn screening and "Is catching and diagnosing cCMV at birth helpful?" It is believed that "Screening in a diverse population like New York will help determine true incidence" (Newborn Screening for Congenital Cytomegalovirus:  A 1 Year Pilot, Sarah Bradley, MS, CGC, 2023).

"With its pilot program, New York is the largest state to enact CMV screening. It's available to about 220,000 babies born annually in the state. State Rep. Linda Rosenthal, a Manhattan Democrat who sponsored Elizabeth's Law, now has a bill before the Legislature following New York’s pilot, that would make universal screening permanent. It expands on a 2018 law Rosenthal sponsored that mandates hospitals test babies for CMV if they fail a hearing screening.

    "The plan is to compare babies who failed a hearing screening with those who tested positive for CMV to babies who did not fail hearing tests, said Dr. Michele Caggana, director of the New York State Department of Health Newborn Screening Program." (USA Today, Oct 2, 2023)

I'm delighted about the pilot study because in addition to being helpful in regard to early intervention and research, it will further educate healthcare professionals about CMV. Too many children with disabilities have never been properly diagnosed with congenital CMV.  The article, "Washing our hands of the congenital cytomegalovirus disease epidemic," makes the point that the "virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed” (Cannon and Davis, 2005). 

The following mother expresses why screening all newborns for CMV is important:

Kristin Schuster of Canandaigua, 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 treatment most effective when given between ages zero to six months. She was not diagnosed with congenital CMV at birth despite failing her newborn hearing screen multiple times, having 'low for gestational age' birth weight, and microcephaly. Autumn received her first pair of hearing aids for bilateral severe hearing loss at 4 months old, glasses for vision impairment at 5 months, an MRI showing brain calcifications, very significant global delays, and received a g-tube for feeding at 15 months of age. Up until then, all of the doctors and specialists we were seeing claimed that her diagnoses were 'unrelated.' It wasn't until I read an article about CMV posted in a Facebook group for Rochester parents of children with hearing loss that I had that 'aha' moment that congenital CMV must be the root cause of all of my daughter's difficulties. When I requested to have her tested for CMV, I was initially given pushback, but when I demanded her newborn blood spot be tested, her neurologist arranged to have it tested from where it was banked in Albany. When the test came back, we finally had our confirmed diagnosis of congenital CMV--too late for her to receive treatment in the optimal first months of life"  (https://congenitalcmv.blogspot.com/2023/01/new-york-test-every-newborn-for-cmv.html).

Kristin's daughter Autumn was her first child, so Kristin assumes she caught CMV from the young children she worked with. Kristin told me, "I was teaching in a pre-kindergarten inclusion classroom while pregnant with Autumn and was unaware of the dangers of CMV exposure." (You can watch Kristin with her daughter Autumn at our June CMV Awareness Month event in the music video, Had I Known, Lyrics and Music by Debra Lynn Alt , 2021.) 

Kristin, myself and Brandi Hurtubise, New York National CMV Foundation Alliance Chair and mother of Samantha, are featured in the article, "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter", The Post-Standard, Vallelunga, E., Jan.1, 2023, Syracuse.com, Dec. 27, 2022 (Facebook). 

It's interesting that recent newborn screening for CMV has seen a decrease in congenital infections. "The hygienic precautions we all have engaged in during the pandemic -- masking, hand-washing and infection prevention behaviors -- were almost certainly responsible for the reduction in CMV transmission, which in turn protected mothers and newborns from the potentially devastating effects of the CMV virus," Schleiss said in a school news release. Researchers also attributed the reduction to stay-at-home initiatives and the closing of group child care centers during those months."(Pandemic Silver Lining: Drop in Infections That Cause Birth Defects, USNews.com, Sept. 12, 2022).  

Minnesota has a good list of protocols to follow when a child tests positive for cCMV: https://www.health.state.mn.us/people/newbornscreening/program/cmv/faq.html