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ELIZABETH SAUNDERS- USA
Lived 16 years Cytomegalovirus (CMV) Mother's Risk Factors: Daycare provider, mother of a toddler, church nursery volunteer Gestational Age: 39 weeks Age Harmed: During pregnancy |
I was unaware that cytomegalovirus (CMV) was an occupational risk for daycare educators when I became a licensed home daycare provider in Maryland in 1987. I was unaware that every year, 8 -20% of caregivers/teachers contract CMV.
My daughter Elizabeth was born severely disabled by congenital CMV in 1989. While I was pregnant with Elizabeth, I not only operated a licensed home childcare center, but I also volunteered in our church nursery with young children and was the mother of a toddler—all things that put me at higher risk for contracting CMV.
Elizabeth was due to be born on Christmas Eve, making my pregnancy with her an especially happy experience. But when she arrived on December 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed.” After a CAT scan, 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." Further tests revealed Elizabeth's birth defects were caused by congenital CMV.
I was then given information that sent my head spinning—literally. I could barely see straight reading material from the Centers for Disease Control and Prevention (CDC) which stated, "People who care for or work closely with young children may be at greater risk of CMV infection than other people because CMV infection is common among young children..." I was stunned. How could it be that no one in the medical or childcare field thought to warn me of this? Nowhere in my childcare licensing training or church nursery training was CMV mentioned. CMV prevention was not discussed in my prenatal doctor visits.
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. 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 a nuclear bomb would drop on my house so I could escape my overwhelming grief 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. Although Elizabeth was profoundly mentally impaired, legally blind, had cerebral palsy, epilepsy, and a progressive hearing loss, we were eventually able to move forward as a happy, "normal" family.
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 seizures. Weighing only 50 pounds, she looked funny to strangers because of her small head and adult teeth, but she was lovely to us with her long brown hair, large blue eyes and a soul-capturing smile. She even won the "Best Smiling Award" at school. Although still in diapers and unable to speak or hold up her head, Elizabeth loved sitting on the couch with her fat, old dog and going for long car rides. She especially enjoyed 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."
In 2006, 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 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.”
Shortly after Elizabeth died, I had a nightmare: visiting a support group of new parents of children with congenital CMV, they suddenly looked at me and asked, “Why didn’t you do more to warn us about CMV?” When I awoke in a cold sweat, I knew I had to make CMV awareness my life’s work.
Many women have joined me or advised me in my work to educate women on how to protect their pregnancies. Marti Perhach, GBSI's cofounder and whose daughter Rose was stillborn due to group B strep, was the first. One friend, former lead singer for Rolling Stone Magazine’s house band, Debra Lynn Alt, wrote and recorded a song about a mother wishing someone had told her how to protect her pregnancy. Click on "Had I Known," music and lyrics by Debra Lynn Alt, to hear a mother's wish.
You can watch Elizabeth grow up and learn CMV prevention in this short music video about a child who couldn't speak, and learn more about my CMV books, articles and resources on my blog at: https://congenitalcmv.blogspot.com
Sincerely,
Lisa Saunders
Child Care Providers Education Committee
National CMV Foundation
[email protected]
Congratulations to Elizabeth's mother on the passage of Elizabeth's Law in New York, USA:
Update as of December 27, 2022: How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter
My daughter Elizabeth was born severely disabled by congenital CMV in 1989. While I was pregnant with Elizabeth, I not only operated a licensed home childcare center, but I also volunteered in our church nursery with young children and was the mother of a toddler—all things that put me at higher risk for contracting CMV.
Elizabeth was due to be born on Christmas Eve, making my pregnancy with her an especially happy experience. But when she arrived on December 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed.” After a CAT scan, 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." Further tests revealed Elizabeth's birth defects were caused by congenital CMV.
I was then given information that sent my head spinning—literally. I could barely see straight reading material from the Centers for Disease Control and Prevention (CDC) which stated, "People who care for or work closely with young children may be at greater risk of CMV infection than other people because CMV infection is common among young children..." I was stunned. How could it be that no one in the medical or childcare field thought to warn me of this? Nowhere in my childcare licensing training or church nursery training was CMV mentioned. CMV prevention was not discussed in my prenatal doctor visits.
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. 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 a nuclear bomb would drop on my house so I could escape my overwhelming grief 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. Although Elizabeth was profoundly mentally impaired, legally blind, had cerebral palsy, epilepsy, and a progressive hearing loss, we were eventually able to move forward as a happy, "normal" family.
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 seizures. Weighing only 50 pounds, she looked funny to strangers because of her small head and adult teeth, but she was lovely to us with her long brown hair, large blue eyes and a soul-capturing smile. She even won the "Best Smiling Award" at school. Although still in diapers and unable to speak or hold up her head, Elizabeth loved sitting on the couch with her fat, old dog and going for long car rides. She especially enjoyed 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."
In 2006, 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 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.”
Shortly after Elizabeth died, I had a nightmare: visiting a support group of new parents of children with congenital CMV, they suddenly looked at me and asked, “Why didn’t you do more to warn us about CMV?” When I awoke in a cold sweat, I knew I had to make CMV awareness my life’s work.
Many women have joined me or advised me in my work to educate women on how to protect their pregnancies. Marti Perhach, GBSI's cofounder and whose daughter Rose was stillborn due to group B strep, was the first. One friend, former lead singer for Rolling Stone Magazine’s house band, Debra Lynn Alt, wrote and recorded a song about a mother wishing someone had told her how to protect her pregnancy. Click on "Had I Known," music and lyrics by Debra Lynn Alt, to hear a mother's wish.
You can watch Elizabeth grow up and learn CMV prevention in this short music video about a child who couldn't speak, and learn more about my CMV books, articles and resources on my blog at: https://congenitalcmv.blogspot.com
Sincerely,
Lisa Saunders
Child Care Providers Education Committee
National CMV Foundation
[email protected]
Congratulations to Elizabeth's mother on the passage of Elizabeth's Law in New York, USA:
Update as of December 27, 2022: How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter
How can I help protect my baby from cmv?
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Are you pregnant or plan to be and have a toddler in group care or work/volunteer in early childhood education or daycare? If you don’t know about your increased exposure to cytomegalovirus (CMV), you should. Please learn how to reduce your chances of contracting CMV, the leading viral cause of birth defects.
Most women of childbearing age don’t know about CMV and that they should not kiss their toddlers around the mouth or share food, cups and utensils with them. According to the Centers for Disease Control and Prevention (CDC), “Most people infected with CMV show no signs or symptoms. That’s because a healthy person’s immune system usually keeps the virus from causing illness. However, CMV infection can cause serious health problems for people with weakened immune systems and for unborn babies (congenital CMV).” Congenital CMV (cCMV) can cause hearing and vision loss, developmental delays, microcephaly and seizures.
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***In addition to urine and saliva, CMV can also be passed through other body fluids, such as blood, tears, semen, and breast milk.
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The CDC provides a fact sheet of prevention tips. “The saliva and urine of children with CMV have high amounts of the virus. You can avoid getting a child’s saliva in your mouth by, for example, not sharing food, utensils, or cups with a child. Also, you should wash your hands after changing diapers. These cannot eliminate your risk of getting CMV, but may lessen the chances of getting it” ("Congenital CMV Facts for Pregnant Women and Parents" flyer at: cdc.gov/cmv).
The CDC states: “About one out of every 200 infants is born with congenital cytomegalovirus (CMV) infection. However, only about one in five babies born with congenital CMV infection will have long-term health problems. A pregnant woman can pass CMV to her fetus following primary infection, reinfection with a different CMV strain, or reactivation of a previous infection during pregnancy." Congenital CMV is estimated to disable 4,000 babies every year in the U.S. (4 million annual births/200 with 1/5 sick or long-term health problems = 4,000 disabled by cCMV).
Toddlers can spread CMV to each other, their child care providers and families. On average, 30-40% of preschoolers in day care excrete CMV in their saliva and/or urine (Red Book: 2015 Report of the Committee on Infectious Diseases, American Academy of Pediatrics (AAP), p. 144). "Up to 70% of children ages 1 to 3 years in group care settings excrete the virus,” states AAP et al. in Caring for Our Children, the book used as a standard for child care centers in the U.S.
Women at higher risk for CMV include:
Parents with children in group care
- “Almost all the babies that I see who have congenital CMV, there is an older toddler at home who is in daycare,” said Dr. Jason Brophy, a pediatric infectious disease specialist, in the Ottawa Citizen (Payne, 2018).
- "Parents of children attending day-care centers” are at increased risk for contracting CMV (Pass et al, 1986).
Ways CMV can be transmitted:
According to the CDC, people with CMV may pass the virus in body fluids, such as saliva, urine, blood, tears, semen, and breast milk. CMV is spread from an infected person in the following ways:
- From direct contact with saliva or urine, especially from babies and young children
- Through sexual contact
- From breast milk to nursing infants
- Through transplanted organs and blood transfusions
WHY DOES CONGENITAL CMV REMAIN LITTLE-KNOWN IN THE U.S.?
WHY DOES CONGENITAL CMV REMAIN LITTLE-KNOWN IN THE U.S.?
Six Possible Reasons
by Lisa Saunders
When told about CMV for the first time, some women dismiss CMV warnings from non-medical professionals and say, "If CMV was really a risk to my pregnancy, if I wasn't supposed to kiss my toddler around the mouth or consider not caring professionally for toddlers, my doctor would have told me."
The following are six reasons why most women have never heard of CMV:
1) CMV prevention education is not part of a doctor’s “standard of care.”
2) Low profile of congenital CMV: "hygienic practices do not appear to be widely discussed by healthcare providers and prospective mothers are often unaware of both CMV disease and the potential benefits of hygienic practices. 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 Finn Davis., 2005.)
3) Some doctors have cited the following reasons for not educating women about CMV:
5) Low media coverage about congenital CMV: In the article, "Why does CMV get so much less news coverage than Zika — despite causing far more birth defects?", Matt Shipman writes, “Researchers we spoke with identified the same factors – fear and the epidemic/endemic nature of the diseases – as driving the media disparity.” Media silence is a problem in regard to prevention, diagnosis and treatment (HealthNewsReview.org, 2018).
6) Child Care providers, though have an occupational risk for CMV, are not being told about CMV despite recommendation from the American Academy of Pediatrics et al., in Staff Education and Policies on Cytomegalovirus. This could be because there is no U.S. law regulating methods of CMV control in the child care setting. According to the Department of Labor, "Education and training requirements vary by setting, state, and employer." In most states, except Utah and Idaho, child care centers are not instructed to tell workers about CMV even though U.S. workers have the right to “receive information and training about hazards” (Occupational Safety and Health Act of 1970).
What can be done to raise CMV awareness until prevention becomes a doctor's "Standard of Care"?
There are 562,420 child care workers in the U.S. (Dept. of Labor, 2017): “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). “Almost all the babies that I see who have congenital CMV, there is an older toddler at home who is in daycare,” said Dr. Jason Brophy, a pediatric infectious disease specialist, in the Ottawa Citizen (Payne, 2018). “Parents of children attending day-care centers” are at increased risk for contracting CMV (Pass et al, 1986).
Not educating all women of childbearing age about CMV can be costly for everyone--and not just in heartache. The estimated cost of congenital CMV to the US health care system is “$1.86 billion annually, with a cost per child of more than $300,000” (Modlin et al., 2004).
Six Possible Reasons
by Lisa Saunders
When told about CMV for the first time, some women dismiss CMV warnings from non-medical professionals and say, "If CMV was really a risk to my pregnancy, if I wasn't supposed to kiss my toddler around the mouth or consider not caring professionally for toddlers, my doctor would have told me."
The following are six reasons why most women have never heard of CMV:
1) CMV prevention education is not part of a doctor’s “standard of care.”
2) Low profile of congenital CMV: "hygienic practices do not appear to be widely discussed by healthcare providers and prospective mothers are often unaware of both CMV disease and the potential benefits of hygienic practices. 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 Finn Davis., 2005.)
3) Some doctors have cited the following reasons for not educating women about CMV:
- Don’t want to frighten their patients: "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death,” said OB-GYN Laura Riley, M.D., director of infectious disease at Massachusetts General Hospital in FitPregnancy magazine (June/July, 2008).
- According to the New York Times in 2016, "The American College of Obstetricians and Gynecologists [ACOG] used to encourage counseling for pregnant women on how to avoid CMV. But last year, the college reversed course, saying, ‘Patient instruction remains unproven as a method to reduce the risk of congenital CMV infection.’ Some experts argue that because there is no vaccine or proven treatment, there is no point in worrying expecting women about the virus...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.” (“CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed,” Saint Louis, 2016).
5) Low media coverage about congenital CMV: In the article, "Why does CMV get so much less news coverage than Zika — despite causing far more birth defects?", Matt Shipman writes, “Researchers we spoke with identified the same factors – fear and the epidemic/endemic nature of the diseases – as driving the media disparity.” Media silence is a problem in regard to prevention, diagnosis and treatment (HealthNewsReview.org, 2018).
6) Child Care providers, though have an occupational risk for CMV, are not being told about CMV despite recommendation from the American Academy of Pediatrics et al., in Staff Education and Policies on Cytomegalovirus. This could be because there is no U.S. law regulating methods of CMV control in the child care setting. According to the Department of Labor, "Education and training requirements vary by setting, state, and employer." In most states, except Utah and Idaho, child care centers are not instructed to tell workers about CMV even though U.S. workers have the right to “receive information and training about hazards” (Occupational Safety and Health Act of 1970).
What can be done to raise CMV awareness until prevention becomes a doctor's "Standard of Care"?
There are 562,420 child care workers in the U.S. (Dept. of Labor, 2017): “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). “Almost all the babies that I see who have congenital CMV, there is an older toddler at home who is in daycare,” said Dr. Jason Brophy, a pediatric infectious disease specialist, in the Ottawa Citizen (Payne, 2018). “Parents of children attending day-care centers” are at increased risk for contracting CMV (Pass et al, 1986).
Not educating all women of childbearing age about CMV can be costly for everyone--and not just in heartache. The estimated cost of congenital CMV to the US health care system is “$1.86 billion annually, with a cost per child of more than $300,000” (Modlin et al., 2004).
Ways Various Countries Choose to Help Protect Unborn Babies from CMV
- “In Australia, state governments have differing recommendations for pregnant ECEC educators working with young children. Some states, such as Queensland, suggest relocating educators who are pregnant to care for children aged over two to reduce contact with urine and saliva” (Clark, 2019).
- In Germany, to protect day care workers from primary CMV infection, their “CMV serostatus must be checked at the beginning of their pregnancy.” If the worker “is seronegative, she is excluded from professional activities with children under the age of three years” (Stranzinger et al., 2016).
