Photo caption: Mothers blindsided by congenital cytomegalovirus (CMV) in their newborns meet up at the National CMV Foundation booth. Despite working in occupations that should have guaranteed they knew the dangers of contracting CMV just prior or during their pregnancies, they now collaborate to ensure all women know how to protect their pregnancies from the leading viral cause of birth defects. (l to r): Megan Honor Pesch, MD, Pediatrician, University of Michigan’s C.S. Mott Children’s Hospital, President-Elect, National CMV Foundation, and founder of the Michigan CMV Project; Lisa Saunders, former licensed childcare provider and founding member of New York Stop CMV Project; Kathleen M. Muldoon, PhD, Associate Professor of Anatomy at Midwestern University, Glendale, AZ, Chair of the Scientific Advisory Committee at the National CMV Foundation, and co-founder of STOP CMV AZ; and Amanda Devereaux RN, BSN, Program Director of National CMV Foundation. (Photograph taken at the Early Hearing Detection and Intervention Annual Meeting, Kansas City, Missouri, 2020)
Photo caption (l to r): Gail J. Demmler-Harrison MD, Attending Physician, Infectious Diseases at Texas Children's Hospital and Professor, Department of Pediatrics, Infectious Disease Section, Baylor College of Medicine; and Kristen Hutchinson Spytek, President, National CMV Foundation, raise awareness of the leading viral cause of birth defects at the CMV Public Health and Policy Conference (Burlington, Vermont, 2018).May 17, 2022
IMMEDIATE RELEASE
Lisa Saunders
New York Stop CMV Project
www.facebook.com/NYStopCMV
LisaSaunders42@gamil.com
Parents and Doctors Believe ALL Women Have the Right to Know About the
Leading Viral Cause of Birth Defects, Cytomegalovirus (CMV)
Pregnant women of toddlers in group care, childcare providers, and ethnic minorities are at increased risk for CMV
Lisa Saunders holds her daughter Elizabeth born with a severely damaged brain from congenital cytomegalovirus (CMV). (Photograph by Jim Saunders, 1989.)
Baldwinsville, New York–Lisa Saunders of the New York Stop CMV Project learned about cytomegalovirus (CMV) the hard way. Her daughter Elizabeth was born with a severely damaged brain from the virus in 1989. Saunders was at higher risk for contracting CMV because she had and worked with toddlers, who are often excreting the virus. “When I was pregnant with Elizabeth, I ran a licensed child care center in my home, volunteered in our church nursery and a toddler— all activities that put my pregnancy at higher risk for CMV — yet I never heard of it. I completed hours of training to get my in-home daycare license, but nowhere was I told of my occupational hazard for CMV until after Elizabeth was born. Like me, many women caring for toddlers (their own or professionally) admit to sharing food with them and using diaper wipes to clean up urine or saliva to save time. Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014). Elizabeth had cerebral palsy, developmental delays, epilepsy, and vision and hearing loss. She died at Nyack Hospital after a seizure at the age of 16 (Lohud, 2006)."
According to the CDC, congenital CMV is acquired in utero and can result in serious birth defects in the baby. About 1 in every 200 babies is born with a congenital CMV infection. Of these babies, around 1 in 5 will have long-term health problems such as hearing and vision loss, microcephaly (small head), developmental and motor delays, and seizures. An article published with the National Library of Medicine states, "Current estimates indicate that approximately 8,000 children are affected each year with some neurological sequelae related to in utero CMV infection. This incidence is far greater than that of better-known childhood disorders, such as Down syndrome (4,000/year), fetal alcohol syndrome (5,000/year), or spinal bifida (3,500/year), making congenital CMV infection the most common cause of birth defects and childhood disabilities in the United States. Considering the public health significance of CMV-related long-term neurological disabilities, it is surprising that more attention is not paid to understanding the neuropathogenesis of congenital CMV infection" (Neuropathogenesis of Congenital Cytomegalovirus Infection: Disease Mechanisms and Prospects for Intervention, 2009).
”CMV is spread from person to person through body fluids. Day care workers, nurses, mothers of young children, and others who work with young children are at greatest risk of exposure to CMV. Since young children commonly carry CMV, pregnant women and women planning pregnancies should take extra care to avoid urine and saliva from young children,” stated 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 (NYMetroParents, 2016). (Dr. Sood’s efforts to prevent the consequences of congenital CMV include co-authorship of a study that changed the paradigm for treatment of congenital cytomegalovirus infection (“Valganciclovir for symptomatic congenital cytomegalovirus disease”, 2015), and his newborn CMV screening program at Northwell Health that has become a model for the State of New York.
More than 30 years after the birth of Elizabeth Saunders, women are still largely unaware of CMV--until it’s too late for them to prevent it. ”Imagine giving birth to a seemingly healthy newborn baby, only to find out a few weeks down the road that your baby is deaf…That is what happened to a Western New York family and they have found that they are not alone…” Marielle Fitzgerald, the baby’s mother, said, “‘Like most pregnant women, I did everything I could to ensure a healthy pregnancy…I followed all of my doctors recommendations to avoid certain foods. I didn't go on a vacation to Florida with our family to avoid Zika, right? But no one probably ever said I should avoid my own daughter's saliva. And if they had, I would have’”(CMV: Virus causing deafness in newborns, WGRZ-TV, 2017).
Throughout her medical career, Gail J. Demmler-Harrison MD, Attending Physician, Infectious Diseases at Texas Children's Hospital and pediatric infectious disease specialist at Baylor College of Medicine in Houston, has been advocating for CMV education, but progress has been slow. Featured in the New York Times article, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed" (Saint Louis, 2016), Dr. Demmler-Harrison stated that not providing CMV counseling is "a missed opportunity to save a baby from the devastating effects of CMV, including death in the womb and permanent disabilities.'"
When Assemblymember Linda B. Rosenthal read the 2016 New York Times article, she thought something had to be done. She sponsored a 2018 CMV law that helps diagnose children with congenital CMV by requiring “testing for cytomegalovirus of newborns with hearing impairments."
Angela Cote of Buffalo appreciates the 2018 CMV law because it led to the quick diagnosis of why Elise, born in 2019, failed her newborn hearing test, giving her access to early intervention, but Angela wishes she had known about CMV before her pregnancy. She told Lisa Saunders in a TV interview how shocked she was by the diagnosis. She couldn’t believe she had never heard of CMV, especially since she was surrounded by young children as a nanny and the mother of a toddler ("CytoMegaloVirus (CMV) - What Moms Wished They Knew," PAC-B TV, 2021).
Kelly Smolar Gerne, a mechanical engineer from Brooklyn told Lisa Saunders, "My daughter Alexis was born in August 2020 with congenital CMV. With the help of Northwell, Dr. Sood and Nurse Stellato, Alexis is thriving because she was diagnosed and treated early following a failed newborn hearing test. While I am angry about the lack of CMV education prior and during my pregnancy, the CMV testing law passed in 2018 meant our family was the recipient of those who had fought before us. I want to continue that forward so all babies in the State of New York will have the option for early intervention."
Brandi Hurtubise of Buffalo told the National CMV Foundation on Facebook about her second child Samantha, born in 2016 with congenital CMV. "No one told me I shouldn't share drinks or food with my toddler while I was pregnant with [Samantha]. Or that I needed to wash my hands after every single diaper change. That I needed to be cautious of his saliva and urine because it could be carrying a virus that would harm my unborn baby. I didn't know because CMV isn't commonly talked about or educated on; even though it is incredibly common."
Assemblymember Linda B. Rosenthal now hopes to improve CMV education with “Elizabeth’s Law” (Assembly Bill A7560B/Senate Bill S6287C), which "Requires the provision of informational materials to child care providers and certain physicians regarding the impacts and dangers of congenital cytomegalovirus infection."
When “Elizabeth’s Law”, named in memory of Lisa and Jim Saunders’s daughter, was first passed by the New York Senate in 2021, Senator John Mannion stated, "My legislation will provide for training and increased awareness so expecting moms have the information they need to make informed decisions to keep themselves and their babies safe. I thank and commend Lisa and Jim Saunders, who have turned their heartache into potentially life-saving action" ("NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness", The Citizen, 2021).
As of May 17, 2022, "Elizabeth's Law" still needs to be passed by the Assembly. The bill is currently with the Assembly Rules Committee so Lisa Saunders wrote to Speaker Carl E. Heastie asking him to put it on the agenda to be voted on.
Lisa Saunders, influential in the passage of a CMV testing law in Connecticut (Cornell Alumni Magazine: "In Memory of Elizabeth”, 2015), says getting a bill introduced and passed is a lot of work but believes that CMV laws are necessary to get the CMV prevention message to ALL women of childbearing age. Sara Menlove Doutre, the special education policy expert behind the Utah CMV law (2013), stated, "Policy and legislation, backed by accurate science, are viable tools to change behaviour to reduce congenital cytomegalovirus (CMV) infections. Addressing CMV through public policy can provide increased awareness among public health officials, access to existing venues for disseminating information...", etc. (Microbiology Australia, 2015).
Lisa's future legislative goals are to make "Elizabeth's Law" a federal law. When Saunders urged one state’s child care policy maker to include CMV in its licensing training, she was told that the content of the health and safety training “is based on federal requirements” and that the agency had other “several key priorities.” Saunders wants CMV education to find its place among those “several key priorities.” To learn which states have or are working to have laws requiring CMV education and/or testing, please visit: https://www.nationalcmv.org/about-us/advocacy.
In addition to Lisa Saunders, Brenda K. Balch, MD, Connecticut's American Academy of Pediatrics Early Hearing Detection and Intervention Chapter Champion, was also instrumental in the passage of Connecticut’s " Act Concerning Cytomegalovirus”. When she testified in Hartford in favor of the bill, she stated, “Studies confirm that when pregnant women adopt preventive good hygiene behaviors, especially when they are interacting with toddlers, it minimizes the transmission of CMV. Some of these simple preventive behaviors are good hand washing, not sharing food, drink or utensils, and avoiding kissing children on the mouth” (letter to Public Health Committee, 2015).
In addition to sponsoring CMV bills, Assemblymember Rosenthal sponsored the New York June Cytomegalovirus Awareness Month Proclamation, which states, "It is difficult for mothers to protect themselves...especially if they are unaware of the virus itself ... less than half of obstetrician-gynecologists tell pregnant patients how to avoid CMV ... It is imperative that women are educated about the virus itself and simple preventative measures, such as not sharing food with toddlers, and washing one's hands after changing infants and toddlers diapers.”
The 2021 CMV Awareness Month Proclamation inspired an event in Lyons, New York, where 222 silver rocks were placed in the Trail of Hope to honor the estimated number of babies born each year in New York disabled by congenital CMV (Finger Lakes Times, June 2021). Two moms in attendance, Jessica Keukelaar of Macedon and Kristin Schuster of Canandaigua, might have contracted CMV through their caregiver/teaching occupations as neither had children of their own during their pregnancies. Jessica is the mother of Kyleigh born with congenital CMV in 2018. She shared with Lisa Saunders the letter she sent to Assemblymember Rosenthal’s office where she stated, “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 [Elizabeth’s Law] 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. Some of the extra equipment Kyleigh requires on a daily basis are, a wheelchair due to immobility, gastrostomy tube for proper nutrition, cochlear implant for hearing, and special orthotics for her hands, wrists, ankles, and feet. She had surgery for her cochlear implant at 17 months, a double hip reconstruction at two years, and surgery to have her g-tube placed at three years. She also takes numerous medications several times per day, and receives 11 Botox injections quarterly to help with her spasticity. 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.”
Kristin, the mother of Autumn born with congenital CMV in 2015, had also never heard of CMV, or that she was at increased risk for the disease because of her occupation. She told Lisa Saunders, "I was teaching in a pre-kindergarten inclusion classroom while pregnant with Autumn and was unaware of the dangers of CMV exposure." Autumn can be seen helping her mom and Saunders place the silver CMV rocks to the music video, “Had I Known) (about CMV), Lyrics and Music by Debra Lynn Alt”, which also features images of those attending the event including Jessica Keukelaar with her daughter Kyleigh and Assemblyman Brian Manktelow, a co-sponsor of "Elizabeth's Law."
Gail J. Demmler-Harrison, MD is delighted by New York's efforts at CMV education. She sent Assemblymember Rosenthal's office a letter of support for "Elizabeth's Law" stating, “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." Her letter concludes: "When mothers and fathers sit across from me in my CMV clinic holding their little baby and ask, 'Why weren't we warned about CMV,' it's heart-breaking. All I can say is, 'I don’t know, I’ve been trying for over 30 years to educate pregnant women about CMV.'”--Gail J. Demmler-Harrison MD.
Organizations such as the March of Dimes, Group B Strep International and National CMV Foundation also provided letters of support for Elizabeth’s Law. Amanda Devereaux RN, BSN of Iowa, Program Director at National CMV Foundation, stated, "By establishing both an education program and helping to facilitate the conversation between women and health care providers, families in New York will have the information they need to prevent [congenital] CMV from impacting their family." Amanda was shocked when her daughter Pippa, born in 2015, was diagnosed at 21 weeks gestation with congenital CMV. She stated in her National CMV Foundation Volunteer Spotlight that “Even as a public health nurse, I was unaware of the impact of cCMV and the fact that I was at increased risk during my second pregnancy… All families deserve to know about cCMV and how it can be prevented and all children affected deserve early diagnosis so they can reach their full potential!”
Dr. Sallie Permar, Chair, Department of Pediatrics, Weill Cornell Medicine, and pediatrician-in-chief, New York-Presbyterian Komansky Children's Hospital, known for her “groundbreaking work on mother-to-child transmission of viruses" stated that CMV is "'a virus that has a PR problem. It's the most common congenital infection in every population...It's a virus we have recognized for over 60 years as the cause of birth defects and brain damage in infants...'" (“Dr. Sallie Permar’s Work Protecting Mothers, Infants from HIV, CMV Lands Her Among ‘Giants’”, Weill Cornell Medicine, 2021).
Saunders suggests five reasons why CMV has a PR (public relations) problem:
CMV education is not "part of standard prenatal care” (Washington Post, 2021).
Doctors don’t want to frighten, worry or “burden” patients (New York Times, 2016).
CMV is a “silent virus”--"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).
OSHA lists CMV as a "Recognized Hazard" and workers have the right to “receive information and training about hazards” (Occupational Safety and Health Act of 1970), but there are no federal laws governing CMV education policies for child care workers.
Medical training downplays the dangers. Michigan pediatrician Megan Pesch, MD, was shocked when her third daughter Odessa was born with congenital CMV. 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...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, 2021).
PBS New Hour republished Dr. Megan Perch's comments from her interview with The 19th: "For Megan H. Pesch, doing everything possible to ensure the health of her third baby became a bit of an obsession. While pregnant, Pesch exercised, avoided changing her cat’s litter and put off getting highlights in hair, just in case the chemicals could have any effects. She even washed her hair with baking soda instead of commercial shampoo during the first trimester — though she is quick to admit this is not an evidence-based recommendation...So she was shocked when her baby Odessa had completely lost her hearing by the time she was 2 1/2 months old. After weeks of tests and uncertainty, Pesch and her husband learned that Odessa’s hearing loss was caused by congenital cytomegalovirus...Pesch’s feeling of being blindsided by her child’s risk to congenital CMV is common, though the virus itself isn’t rare...The risk can be mitigated by parents washing their hands and not sharing food with older children, however doctors often do not counsel about these practices in connection with CMV" ("This common virus can impact babies’ long-term health. Why aren’t more parents aware of it?", PBS News Hour, June 2022).
Photo caption: Dr. Gail J. Demmler-Harrison's automobile sports a "CMV DOC" license plate (those are her three dogs).
Despite the difficulties faced when trying to raise awareness of CMV, there are many doctors and parents who won't rest until women know how to protect their pregnancies from this "silent" but deadly virus. Dr. Demmler-Harrison, spearhead of the National Congenital CMV Disease Research Clinic and Registry, does whatever she can to raise awareness and even attached a personalized CMV DOC license plate to her car. When asked why she chose to focus her medical career on CMV, she responded, “I was drawn to CMV, not because it’s easy, but because it’s hard. When I was a postdoctoral fellow, my mentor, Dr. Martha Yaw approached me...she put her arm around me and said, ‘I’d like you to be my post-doctoral fellow... looking at congenital CMV in pregnant women, and the long-term outcomes in their babies.’…So I slept on it... And said, ‘Yes. I like viruses. I like solving problems. This is going to be hard. And yes, I’ll do it.’ And that’s sort of the door that was opened for me. That I walked through, and I never left” (Interview with cCMV expert, Dr. Gail Demmler-Harrison, The Hou to Guide, 2020). You can “meet” Dr. Demmler-Harrison and see her passion for preventing CMV at: "CMV Ends With Me - Dr. Demmler-Harrison" (National CMV Foundation, 2017).
Photo caption: (l to r): Sara Ornaghi, MD, PhD, Dept. of Obstetrics and Gynecology, MBBM Foundation at San Gerardo Hospital, University of Milan-Bicocca, Monza, Italy; Gail J. Demmler-Harrison MD, Attending Physician, Infectious Diseases at Texas Children's Hospital and Professor, Department of Pediatrics, Infectious Disease Section, Baylor College of Medicine; Lisa Saunders, former licensed childcare provider and founding member of New York Stop CMV Project; and Brenda K. Balch, MD, Connecticut's American Academy of Pediatrics Early Hearing Detection and Intervention Chapter Champion (Photograph taken at the CMV Public Health and Policy Conference, Burlington, Vermont, 2018).
Dr. Sara Ornaghi of Italy, a maternal-fetal medicine specialist, wrote to Lisa Saunders in March 2022, "As a maternal-fetal medicine specialist, I've been working really hard to promote awareness and improve knowledge of congenital CMV in pregnant women as well as my colleagues. All mothers have the right to be informed by their caring obstetricians about the risk of acquiring CMV infection during pregnancy and how to possibly prevent it." (Lisa met Sara Ornaghi, MD, PhD, Dept. of Obstetrics and Gynecology, MBBM Foundation at San Gerardo Hospital, University of Milan-Bicocca, Monza, Italy, when Dr. Ornaghi studied at the Yale University School of Medicine in 2017. Lisa interviewed her, and Michael J. Paidas, M.D., on SEC-TV (The Lisa Saunders Show: Yale CMV Study on Valnoctamide, 2017).
Kristen Hutchinson Spytek, President and a co-founder of National CMV Foundation with her husband John, was inspired to raise awareness of CMV when their daughter Evelyn Grace was born with congenital CMV in 2013 (Evelyn Grace passed away in 2014). John stated, “‘You can't prevent colds, but they warn people to do that. And this [virus] has disastrous effects…and no one is doing anything about it. So we decided from the start, we can't sit around and do nothing.’...The primary goal [of the Foundation] is to inform people about CMV and to get obstetricians, gynecologists and pediatricians to talk about the virus and develop routine screenings for it. (Tampa Bay Times, 2016)
Arizona’s Kathleen M. Muldoon, PhD, Associate Professor of Anatomy, was herself blindsided by CMV with the birth of her son, Gideon. “CMV can cause hearing loss three to five years after the initial infection, and Gideon's starting to show some hearing loss in his left ear. Muldoon says she can't believe she never heard of CMV, especially since she teaches anatomy to medical students…’Even before Gideon was born, for close to a decade, I had been teaching about embryology and all the different factors that can go into creating a congenital birth defect. And yet, I'd never heard of this virus’.”(NPR, 2017)
According to Nellie Brown, MS, CIH, the following workers are at risk for CMV: "Childcare workers, early interventionists, early childhood providers (including daycare providers, pre-school teachers) and Healthcare workers (including nurses, therapists)" (Occupational Exposure to Cytomegalovirus (CMV): Preventing Exposure in Child Care and Educational Settings, Including OSHA Advisories, Cornell University, ILR School, Workplace Health and Safety Program, 2019).
Attention Caregivers/Teachers: The American Academy of Pediatrics (AAP) states, “With regard to child-to-staff transmission, studies have shown increased rates of infection with CMV in caregivers/teachers ranging from 8% to 20% (AAP et al., 2017). Recent surveys show, however, that most child care providers do not know about CMV and many acknowledge using diaper wipes to clean hands instead of following proper protocols (Thackeray and Magnusson, 2016).
In her effort to get New York legislators to pass "Elizabeth's Law", Lisa Saunders uses several avenues to raise awareness of CMV--she does not want Elizabeth's life, suffering and death to have been in vain. The author of several articles and books on the topic, Lisa and her husband Jim, a recently retired Pfizer scientist, are walking across the State of New York between Buffalo and Albany on the 360-mile Erie Canalway Trail, leaving behind #StopCMV rocks painted by Tabitha Rodenhaus of Buffalo, the mother of Kaia born with congenital CMV in 2016. Jim and Lisa tell those they meet along the Trail, including doctors who have asked them about their #Stop CMV rocks, of their belief that CMV education is a "women's rights" issue--that all women of childbearing age have the right to know about CMV. Lisa says, "Congress created the Erie Canalway National Heritage Corridor in 2000 because it was 'instrumental in the establishment of strong political and cultural ties between New England, upstate New York and the old Northwest and facilitated the movement of ideas and people ensuring that social reforms like...the women’s rights movement spread across upstate New York to the rest of the country...'" (Congressional Bills,106th Congress, 2000).
Lisa wrote a "Declaration of Women's CMV Rights and Sentiments," inspired by the Women's Rights Declaration of Sentiments signed in 1848 and launched along the Erie Canalway National Heritage Corridor in Seneca Falls. Lisa says that several people across the country have already signed this statement that begins with: "We, the undersigned, hold these truths to be self-evident; that women are created with certain inalienable rights; that among these are life, liberty, the pursuit of happiness, and the right 'to enjoy the highest attainable standard of physical and mental health' (Amnesty International), and the right to protect their pregnancies from infections and all other known causes of preventable birth defects. We believe women have the right to be educated about CMV (cytomegalovirus), the leading viral cause of birth defects, and how to reduce their chances of contracting it before and during their pregnancies."
Edel Law of Tappan told Lisa Saunders that Elizabeth's Law "is important to me because my three-year-old daughter has congenital CMV. It came as a total shock when at 31 weeks pregnant, I found out she had abnormal brain development. Upon further testing, we found out I had contracted and passed CMV onto my daughter. After learning about CMV, it was not shocking that I contracted the virus since I had a toddler in preschool and was an early childhood educator. My daughter has developmental delays, single sided deafness, wears a cochlear implant, and has a form of heart failure."
Saunders hopes the passage of "Elizabeth's Law" in New York will mean that, in addition to the distribution of CMV educational materials, the NY Department of Health's cytomegalovirus webpage would be updated to include those materials and that CMV will be specifically mentioned on the Department of Health's webpage, ‘Prevention Prior To & During Pregnancy’. Although it alludes to conditions such as fetal alcohol syndrome, spina bifida and toxoplasmas, which cause fewer birth defects than CMV, she thinks women need to be aware that the saliva of toddlers should be handled carefully and suggests wording such as:
For those who wish to educate women of childbearing about several infections at once, Lisa suggest the CDC's webpage, "10 Tips for Preventing Infections Before and During Pregnancy".
To learn more, contact Lisa Saunders of the New York Stop CMV Project at LisaSaunders42@gmail.com or visit: https://www.facebook.com/NYStopCMV
Photo caption: Lisa Saunders speaks at the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia, about how congenital cytomegalovirus (CMV) affected her daughter's life and death at the 2008 International Congenital CMV Conference sponsored by the CDC and the Congenital CMV Foundation.
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ADDITIONAL INFORMATION
CMV informational materials:
- CDC's CMV fliers in English and Spanish.
- When Utah passed a CMV education and testing law in 2013, directing the Utah Department of Health to create a public education program, it published the flier, “What childcare providers need to know about CMV” in English and Spanish.
- Those who work with children will also benefit from the CMV Training Module created by the University of Connecticut.
- Hang attractive wall posters from the National CMV Foundation, which include, “ARE YOU PREGNANT”. If child care centers hang those flyers in a central spot, then parents will also learn how to protect their pregnancies-- critical because they too are at increased risk for contracting CMV.
- Training resources for employers/policy makers includes, “Occupational Exposure to Cytomegalovirus (CMV): Preventing Exposure in Child Care and Educational Settings, Including OSHA Advisories (Cornell University, ILR School, Workplace Health and Safety Program, 2019, Nellie Brown, MS, CIH)
- Watch how to tackle the problem of CMV in child care settings in the presentation, "Cytomegalovirus Protection and Prevention: An Issue for Day Care and Child Care Providers", by Nellie Brown, Director of Workplace Health and Safety Programs for both the Outreach Division statewide and for the Buffalo Co-Lab of Cornell University’s ILR School (May 16, 2022).
- Medscape, which offers free professional online education and CME (Continuing Medical Education) to physicians and healthcare professionals, now works 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). Dr. Demmler-Harrison told Saunders, “This is just the first of many CME educational programs Medscape has planned. Check back often for new programs!" 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.)
- The Texas Health and Human services created the free online CMV training module, "The Virus Among Us: Protecting Texas Mothers and Babies from Cytomegalovirus".
- Still not convinced prenatal CMV counseling will make any difference? Read about several CMV prevention studies in the post, “The Role of Prenatal Counseling in Preventing Congenital CMV,” which concludes, "There is a substantial amount of evidence that pregnant women can reduce their risk of transmission through simple behavioral changes... ", Vanessa Colleran, The Massachusetts Congenital CMV Coalition, 2020).
Published legal cases involving women who were not educated about their CMV risks:
1) Connecticut: Lawsuit featured in the article, "Couple wins $37.6 million in Superior Court ruling against UConn Health for fertility procedure that left one child dead and her twin requiring lifetime medical attention", which included the comment, “...did not inform Monroe-Lynch and 'knowledgeably obtain her consent' about the risks associated with a CMV infection, according to the lawsuit” (Hartford Courant, 2021). The lawyers' website states, “The devastating consequences of contracting congenital CMV infection early in pregnancy are well-known in the medical community. There are simple safeguards in place to protect prospective parents and their children from this horrible disease” (Walsh Woodard LLC, 2021).
2) Australia: ”A Court of Appeal ruled that the child's disabilities resulted from the woman being infected with cytomegalovirus (CMV) at work (Hughes v SDN Children's Services 2002)” (WorkSafe). Lawyers commented, “The allegations of negligence were that ...breached its duty of care to Linda ...by failing to warn her of the risks of CMV in circumstances where the centre knew or ought to have known of the risks of CMV to pregnant women…”(Meridian Lawyers).
When Lisa Saunders connected with a childcare center director willing to tell her employees about CMV, the director sent a memo to her staff in accordance with Caring for Our Children, the collection of national standards for early care and education settings by the American Academy of Pediatrics (AAP), which states, that staff of childbearing age should be provided the information about CMV and “be referred to their primary health care provider or to the health department authority for counseling about their risk of 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). Several months later, however, a volunteer at the Center told Saunders that none of the new staff were aware of CMV. Saunders says, “This is why having a policy in place is key. The AAP suggests that all staff (paid or volunteer) sign a form similar to its sample one in Model Child Care Health Policies, titled, ‘Acceptance of Occupational Risk by Staff Members’ (p. 116), which mentions ‘exposure to infectious diseases (including infections that can damage a fetus during pregnancy)’
How other countries handle CMV in child care
GERMANY AND AUSTRALIA
Germany: “to protect DCWs [daycare workers] from primary infection, their CMV serostatus must be checked at the beginning of their pregnancy. When the DCW is seronegative, she is excluded from professional activities with children under the age of three years…“ (Stranzinger et al., 2016).
“In Australia, state governments have differing recommendations for pregnant ECEC [early childhood education and care 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).
Media Coverage in New York Regarding CMV Legislation
Eagle Newsroom, "Baldwinsville couple advocates for 'Elizabeth's Law' to stop cytomegalovirus: Bill named in memory of their daughter," Dec. 14, 2021.
Spectrum News: "Couple pushes for law in memory of their daughter" by Jessica Houghtaling (Jul. 01, 2021). Includes interview with Dr. Sunil Sood.
Finger Lakes Times, "Trail of Hope celebration in Lyons marks CMV Month in New York", Steve Buchiere (Jun 11, 2021).
Music video: "Had I Known [about CMV], Lyrics and Music by Debra Lynn Alt," produced by Mark De Cracker (June 2021).
Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV", Steve Buchiere (June 4, 2021).
The Citizen: "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness", Robert Harding (June 2, 2121).
Syracuse Woman magazine, "Fighting CMV One Step at a Time (p.28)", Emma Vallelunga (May 2021) (p.29 image of Stop CMV hand, rock and shirt)
The Citizen: "'Elizabeth's law,' named for CNY couple's daughter, would boost CMV awareness", Robert Harding (May 4,2021)
The Citizen, "Challenge for Change: Walking across NY to raise awareness of CMV", David Wilcox (Mar 31, 2021)
Cornell Alumni Magazine: "In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action," Alexandra Bond (Sept/Oct 2015).
Materials produced by the "ChildCare Providers Fighting CMV" project by Lisa Saunders
1) Above-sink wall flyer on hand-washing, "Share a Meal Not the Germs"
Colored in version of wall sign, "Share a Meal Not the Germs" :
https://drive.google.com/file/d/0B9Klfxar2CmjLTdMVXQzTVA1UkNqaFIwNmhJNEJNZGxXeXdj/view?usp=sharing
Above-sink wall flyer for hand-washing, "Diaper Wipes Don't Kill CMV"
https://drive.google.com/file/d/1wcGpHOfu3lLKl9vYR_KhI5LIqI_h1tvC/view?usp=sharing
For children to color in: "Share a Meal Not the Germs":
https://drive.google.com/file/d/1rHTADLykS58wRX7qBPRzYUwLDYnzFA_u/view?usp=sharing
2) Wall Flyer For Women Who Care for Toddlers:
https://drive.google.com/file/d/0B9Klfxar2CmjVzdONUZVNVBhSVlNQS03b0kyWk9RaGJjbmMw/view?usp=sharing
3) Fun Teaching Tool Kit for Students and Families: Fairytale tells how to “Share a Meal, Not the Germs.”
Click here for free, two-pages of story and placemat for coloring.
a. An educational “coloring book, Once Upon a Placemat: A Table Setting Tale by Lisa Saunders and Jackie Tortora. Free pdf version of Once Upon a Placemat: A Table Setting Tale (or the educational fairy tale can be purchased as a bound coloring book, visit Amazon for $5.38). Or, download the words only for a one-page read a loud. OR, READ THE 2ND EDITION IN COLOR. Click here for PowerPoint or pdf.
b. Placemats: Side one: Placemat with tableware characters with space for your coloring artist's name (perfect for laminating and using as a table-setting reminder): https://drive.google.com/file/d/0B9Klfxar2Cmjd21OTjB6SjNfYVU/view
c. Side two: Germ prevention tips and hand-washing instructions.
d. Video: Short introduction of the tableware characters by Lisa Saunders at: https://www.youtube.com/edit?video_id=_0jDOKPFg4M
SUGGESTED LESSON PLAN FOR CHILDREN
Staff can work into STEAM (science, technology, engineering, art and math) theme*
Read aloud the fairytale, "Once Upon a Placemat: A Table-Setting Tale," then share a meal together. Help the children wash their hands and set their place setting by referring to the tableware characters. You can say things like, "remember, Mr. Knife is afraid the dish will run away with the spoon, so put his teeth toward Mr. Plate" and "Miss Cup hates it when people share her without giving her a bath first because of those naughty germs."
If possible, give each child a "share a meal, not the germs" picnic kit with these suggested items:
- Bag (paper or reusable insulated bag).
- Plate, cup, napkin, fork, spoon, knife.
- Crayons or washable markers.
- Placemat with tableware characters (free pdf for coloring and possible laminating).
- Picnic food (homemade or prepackaged that would use all utensils, such as peanut butter, crackers, applesauce and cake).
- Hand sanitizer or sanitizing wipes.
- Sink hand-washing sign and tri-fold flyer on CMV prevention to take home (found on blog post: https://congenitalcmv.blogspot.com/2018/05/free-cmv-prevention-tool-kit-for.html)
- If funds are available, give a child their own bound copy of Once Upon a Placemat: A Table Setting Tale to color and share with their families so their parents can reinforce the table-setting lesson and learn how to prevent CMV, the #1 birth defects virus, as well as other diseases (book available on Amazon for $5.38).
*STEAM is a popular way to package and present the interconnectedness of Science, Technology, Engineering, Art and Math in the regular curriculum. When you talk about germs, the coloring book, “Once Upon a Placemat” (Art and Literacy), introduces germs (science, biology) in a format that integrates the arts. Drawing and writing activities can be planned to further integrate those domains. Teachers can further bring in technology and engineering by designing activities that help the children to "invent" equipment or machines to help better wash hands, keep food fresh and germ free, etc. Math can enter into the plan by graphing how long children wash their hands, how often they wash their hands, keep track how many uses the classrooms get out of a single pump bottle of hand soap, etc. With a little more thought (and a few trips to Pinterest!) lots of germ-based activities can be created and integrated.
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