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

Who will ensure pregnant caregivers/teachers know about cytomegalovirus (CMV), the #1 birth defects virus, and how to reduce their risk of contracting it?

In the above interview, The Path to CMV Prevention - 03/20/2023 (Public Access Channel Baldwinsville), I share my cytomegalovirus (CMV) journey and laws passed or sought. 

I am a former, licensed in-home child care provider who was unaware of her occupational risk for CMV - and how to reduce that risk-- until it was too late to help my newborn. When I learned about CMV after receiving my daughter Elizabeth’s diagnosis of congenital CMV, my head spun. I thought I lived in a country that told its workers about their occupational hazards. Elizabeth’s brain was small and damaged. She had hearing loss, blindness, mental challenges, cerebral palsy and epilepsy. She died after a seizure in 2006 at the age of 16.

In 2012, I received an email from a distressed grandmother about her grandson just born with congenital CMV in Connecticut. The baby's mother was a high school student interning in a daycare center. The young mother, just like me decades earlier, was unaware she was putting her pregnancy at increased risk by working with young children. When I visited the family in the hospital, the attending nurse asked me, "Knowing what you do about CMV, why haven’t you launched an awareness campaign?" I tried to explain that I've been doing just that for years through my writing and speaking, but with little, long-term result. I believe it will take laws to ensure child care providers learn about CMV.

To date, I continue to hear from child care providers distraught that their employers didn't educate them about CMV--despite the fact OSHA recognizes CMV as an occupational hazard to them (https://www.osha.gov/cytomegalovirus/hazards). It pains me that the newborns of our nation's caregivers/teachers are not benefitting from the Occupational Safety and Health Act of 1970, which requires workers receive "information and training about hazards”. 

Recent studies show that child care providers are largely unaware of CMV and many acknowledge using diaper wipes to clean (Thackeray and Magnusson, 2016). Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014). In addition,

specific information about CMV is not reaching child care providers despite guidelines from the following organizations: 

• National Association for the Education of Young Children (NAEYC) has procedures in place to "reduce occupational hazards such as infectious diseases (e.g., exposure of pregnant staff to CMV…"  (NAEYC Early Childhood Program Standards and Accreditation Criteria, p. 90).
• American Academy of Pediatrics states, "Up to 70% of children ages 1 to 3 years in group care settings excrete the virus...Female employees of childbearing age should be referred to their primary health care provider or to the health department authority for counseling about their risk of CMV infection. This counseling may include testing for serum antibodies to CMV to determine the employee’s immunity against CMV infection...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”  (Staff Education and Policies on Cytomegalovirus (CMV), Caring for our Children, American Academy of Pediatrics, American Public Health Association, National Resource Center for Health and Safety in Child Care and Early Education. Retrieved from: http://nrckids.org/CFOC/Database/7.7.1.1, revised 2017).

• CDC and American College of Obstetricians and Gynecologists (ACOG) guidelines, and those of other well-respected organizations, are below my signature. 

According to the CDC, about 1 out of 200 babies is born with congenital cytomegalovirus or CMV. Of those, 1 out of 5 will have permanent disabilities (www.cdc.gov/cmv).  "CMV is more common among socially disadvantaged groups, and it clusters geographically in poor communities" (Lantos et al, 2017).

Between 8 - 20% of child care providers contract CMV every year (American Academy of Pediatrics) as compared to 1-4% of women (who have never had CMV) in the general population (CDC).  

Most caregivers/teachers are still unaware of CMV because:

1) Although OSHA lists CMV as a "Recognized Hazard", there are no federal laws governing CMV education policies for child care workers. The Department of Labor states, "Education and training requirements vary by setting, state, and employer." An employer once admitted to me that the inconvenient truth about CMV in child care made her worry about recruiting providers, but she did the right thing and sent a memo to her staff. However, months later, a volunteer there told me that none of the new staff knew about CMV (which is why I believe only laws will make a true difference). One state policy maker told me that the content of their health and safety training is part of "our state plan and is based on federal requirements."

2) CMV education is not "part of standard prenatal care” (Washington Post, 2021).

3) Doctors don’t want to frighten, worry or “burden” patients (New York Times, 2016).

4) CMV is a “silent virus” that goes largely undiagnosed, so even the medical community isn't fully aware of how common it is: "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.” (Washing our hands of the congenital cytomegalovirus disease epidemic, Cannon and Davis, 2005).

5) Medical training downplays the dangers. Michigan pediatrician Megan Pesch, MD, was shocked when her third daughter was born with congenital CMV. She stated that  "many health-care providers tend to minimize or ignore the risks." She 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...”(Washington Post, 2021).

Some in the medical community are unsure that prevention education can make a difference (so why "burden" women with information about CMV), yet according to education studies, the efficacy of hygienic precautions has been shown to be greater than 75% (Adler, 2015). In addition, if child care providers knew about CMV, they could discuss their risk with their doctor and decide their best course of action to protect their pregnancies. Child care providers may determine to be 1) more careful to follow infection control protocol, 2) ask to work with children over two, or 3) decide to leave the child care industry during pregnancy.

I recently met two mothers like me, former caregivers/teachers, at the June 2021 Cytomegalovirus Awareness Month event in central New York where we placed over 220 silver rocks (the color of CMV awareness) on the Trail of Hope (Buchiere, 2021) to honor the estimated number of babies born disabled by congenital CMV in New York each year.  You can watch Autumn (born with congenital CMV in 2015), the beautiful daughter of Kristin Schuster of Canandaigua, "help" us with the rocks in the music video, "Had I Known, Lyrics and Music by Debra Lynn Alt" (YouTube).  Autumn's mother, Kristin, stated that her "risk for contracting CMV came through her former job as a pre-kindergarten teacher when she was pregnant with her daughter Autumn" (Vallelunga, 2022). Jessica Keukelaar of Macedon watched us place the CMV rocks with her first child Kyleigh, born with congenital CMV in 2018. Like Kristin and myself, Jessica worked with young children during her pregnancy and was unaware of her occupational risk for CMV. In support of a 2022 New York CMV education bill (A7560B),  Jessica Keukelaar wrote a letter stating, “I was a caregiver in a daycare center when I became pregnant with my daughter born with congenital cytomegalovirus (CMV)... I had never heard of CMV or the precautions to take. This bill is important to me because it came as a complete shock when my daughter was born full term, in 2018, with numerous urgent health issues due to CMV... My daughter has developmental delays, spastic cerebral palsy which affects her entire body, eating and digestive difficulties, progressive hearing loss, microcephaly, and more...Congenital CMV has affected every aspect of Kyleigh’s life, as well as our whole family. I wish that someone took the time to educate me about CMV since I was at an increased risk of infection ”(Memo in Support of A7560B, 2022). 

In 2022, we three moms helped New York pass the CMV education bill A7560B, named "Elizabeth's Law" in memory of my daughter. Although it is now required for child care providers to receive printed information about CMV (NYAssembly.gov, 2022),  they are still not required to receive actual training on this recognized "hazard”.

I, and others before me, have asked OSHA if they can add CMV to its bloodborne pathogens standard, because then, "employers having employees with exposure to blood or other potentially infectious materials (OPIM) must train employees annually regardless of the employees' prior training or education" (Standard Interpretations, 2007). I think it's important to recognize the significance of this statement made in 2022: "Childcare workers, but not healthcare workers, have an increased risk of prevalent and incident CMV infection...These findings suggest that enforcing simple, conventional hygienic measures in childcare settings could help reduce transmission of CMV..."(Balegamire et al.,2022).

Although there are several organizations geared to childcare providers that mention CMV, the information is not actually appearing in the training and/or packets of information given to new  hires or volunteers. 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). 

Parents of children in day-care centers are also at increased risk for contracting CMV (Pass et al, 1986). “Approximately 1-4% of all pregnant women will experience a primary CMV infection during their pregnancy. If you work in a child care setting, the risk increases to approximately 10%. If you have a toddler at home who is actively infected with CMV and shedding CMV in their saliva or urine, the risk is even higher, approaching 50% in some studies” (“CMV In Pregnancy: What Should I Know?”, Demmler-Harrison, 2014).

If training incurs additional costs, it is also important to consider the medical care costs of NOT preventing congenital CMV: "Congenital CMV-related sequelae affect over 5000 children annually, and costs are greater than $1 billion annually in direct medical care in the United States" (Kabani, 2020). Of course there are other costs to congenital CMV, such as lost wages, the cost of providing specialized education, etc. Another estimate: "at least 3000 [newborns] are estimated to develop permanent neurologic disabilities each year due to cCMV infection...With an estimated annual cost of up to $4 billion in the United States, cCMV infection is an enormous public health concern..." (Gantt, S, 2016). 

 

Please see CMV educational resources below my signature. Thank you for your attention to this matter.

Sincerely,

Lisa Saunders

Baldwinsville, NY 

New York Stop CMV

AuthorLisaSaunders.com

About Lisa's CMV work

RESOURCES TO HELP EDUCATE CHILD CARE PROVIDERS

1. Centers for Disease Control and Prevention (CDC) CMV info available in English and Spanish: "Congenital CMV Facts for Pregnant Women and Parents":https://www.cdc.gov/cmv/resources/pregnant-women-parents.html

2. Caring for Our Children (AAP et al.) has a page that can be downloaded/ printed as a pdf. Click "Save as PDF" found on the right hand corner of: "Staff Education and Policies on Cytomegalovirus (CMV)" (American Academy of Pediatrics, American Public Health Association, National Resource Center for Health and Safety in Child Care and Early Education. (Revised 2017). National Health and Safety Performance Standards: Guidelines for Early Care and Education Programs. Retrieved from Caring for Our Children:http://nrckids.org/CFOC/Database/7.7.1.1).

3. CMV Training Module for child care providers (University of Connecticut):https://youtu.be/k9MFAEYVuLs

4. National CMV Foundation has attractive wall fliers: https://www.nationalcmv.org/resources/educational-downloads

5. Model Child Care Health Policies, a book published by the American Academy of Pediatrics, has a sample document to be signed by staff (paid or volunteer) to show “Acceptance of Occupational Risk by Staff Members,” which includes “exposure to infectious diseases (including infections that can damage a fetus during pregnancy)” (AAP Pennsylvania Chapter, Aronson, SS, ed., 2014, p. 116).

6. For Employers: Publication: Brown, N. J. (2019, November). "Occupational exposure to cytomegalovirus (CMV): Preventing exposure in child care and educational settings, including OSHA advisories." Ithaca, NY: Cornell University, ILR School.  Download video workshop. This publication/presentation is by Nellie Brown, MS, CIH, Director of Workplace Health & Safety Programs, 

Lead Programs Manager, Certified Industrial Hygienist, ILR Outreach Statewide And Buffalo Co-Lab,  617 Main St. – Suite 300, Buffalo, NY 14203, ILR School, Cornell University, t. 716 852 1444 x111,
njb7@cornell.edu, www.ilr.cornell.edu

7. Moderna:  www.nowiknowcmv.com

8. Medscape, which offers free professional online education and CME (Continuing Medical Education) to physicians and healthcare professionals, is now working to advance awareness of congenital CMV. Gail J. Demmler-Harrison, MD can be seen introducing its new CMV program: “As chair of the steering committee, I’d like to welcome you to  Clinical Advances in Cytomegalovirus or CMV, a comprehensive learning center for clinicians who treat patients with CMV or who treat patients who are at risk for CMV…” (medscape.org/sites/advances/cmv). Steering Committee members include Sallie Permar, MD, PhD; Amanda Devereaux, RN, BSN; Megan Pesch, MD, MS; Natali Aziz, MD, MS; and Nancy Durand, MD, FRCSC.(Series supported by an independent educational grant from Moderna, Inc.)

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Since our country's goal is to follow the guidelines of organizations such as the CDC, American Academy of Pediatrics (AAP); American College of Obstetricians and Gynecologists (ACOG); and the Occupational Safety and Health Administration (OSHA), I thought I would compile a list of organizations that promote CMV prevention education:

1. American College of Obstetricians and Gynecologists (ACOG) - Under "What infections should I be concerned about and how can I reduce my chances of getting them during pregnancy", ACOG states, “CMV can be spread by contact with an infected child’s urine or other body fluids. Pregnant women who work with young children, such as day care workers or health care workers, should take steps to prevent infection...(https://www.acog.org/womens-health/faqs/reducing-risks-of-birth-defects ).
2. American Academy of Pediatrics (AAP) states:  "Despite the magnitude of the problem as well as evidence for efficacy of preventive actions, awareness among women of childbearing potential is low..." (AAP, 2022). In its book, Caring for Our Children,  AAP et al. feature: “The importance of hand hygiene measures (especially handwashing and avoiding contact with urine, saliva, and nasal secretions) to lower the risk of CMV; The availability of counseling and testing for serum antibody to CMV to determine the caregiver/teacher’s immune status. (AAP et al., nrckids.org/CFOC/Database/7.7.1.1, 2017).  In addition, its book, Model Child Care Health Policies, includes a document to be signed by staff (paid or volunteer) to show “Acceptance of Occupational Risk by Staff Members,” which includes “exposure to infectious diseases (including infections that can damage a fetus during pregnancy)” (AAP, Pennsylvania Chapter, Aronson, SS, ed., 2014, p. 116).
3. U.S. Congress: "Recommends that more effort be taken to counsel women of childbearing age of the effect this virus can have on their children"(https://www.congress.gov/bill/112th-congress/senate-resolution/215).
4. Centers for Disease Control and Prevention (CDC) - "People who have frequent contact with young children may be at greater risk of CMV infection because young children are a common source of CMV. " (https://www.cdc.gov/cmv/congenital-infection.html)
5. Occupational Safety and Health Administration (OSHA) recognizes CMV as a “hazard” for childcare workers (https://www.osha.gov/cytomegalovirus/hazards).
6. Moderna: "Moms-to-be should talk to their doctors about CMV and take precautions."
7. March of Dimes - "CMV often spreads during diaper changes, bathing and other close contact with babies and young children. Children can get infected with CMV at child care or school and pass it on to their families, caregivers and other children... CMV spreads easily in child care centers or preschools where children share toys that may carry CMV." (https://www.marchofdimes.org/complications/cytomegalovirus-and-pregnancy.aspx)
8. National CMV Foundation  - "Cytomegalovirus, or CMV, is a public health issue... we support a policy agenda aimed at ensuring access to education for women of childbearing age, accelerating research funding, screening newborns for congenital CMV, and advocating for a vaccine. Congenital CMV infection is largely undetected because the majority of affected infants are asymptomatic at birth."  https://www.nationalcmv.org/about-us/advocacy 
9. National Association for the Education of Young Children and its document, “NAEYC Early Childhood Program Standards and Accreditation Criteria & Guidance for Assessment,” acknowledges the need to "reduce occupational hazards such as infectious diseases (e.g., exposure of pregnant staff to CMV…)”p.90.
10. ChildCare Aware of America: "if you are a childcare worker, a nursery volunteer, or have a toddler in child care, you need to know about cytomegalovirus (CMV)." (The Danger of Spreading CMV: How We Can Protect Our Children (June 2017).

NOTE 1

I have sent information similar to the above to organizations in the child care industry such as:

• National Association for Family Childcare (NAFCC) is the group that supports and does accreditation for home based/family chilldcare businesses, www.nafcc.org
• Zero to Three focuses on the development of babies and toddlers, especially social justice and equity work. www.zerotothree.org , and
• Child Trends does independent research about childhood issues and has a newsletter. https://www.childtrends.org/
• National Association for the Education of Young Children (NAEYC) is the group that does accreditation for childcare centers, https://www.naeyc.org/, naeyc@naeyc.org, woyc@naeyc.org