IMMEDIATE RELEASE
Lisa Saunders
Facebook.com/NYStopCMV
LisaSaunders42@gmail.com
Baldwinsville, New York–Lisa Saunders of New York Stop CMV learned about cytomegalovirus (CMV), the leading viral cause of birth defects, the hard way. Her daughter Elizabeth was born with a severely damaged brain from the virus in 1989. Saunders, like most pregnant mothers of toddlers, was at higher risk for contracting CMV: “When I was pregnant with Elizabeth, I ran a licensed child care center in my home, volunteered in our church nursery, and cared for a toddler of my own — all activities that put my pregnancy at 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 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.
The American Academy of Pediatrics (AAP) states the following about child care providers: “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 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).
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, Nellie Brown, MS, CIH).
Three decades years after Elizabeth's birth, 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.'" Two studies proving education works were summarized in the article: "A study in a French hospital found five to 10 minutes of counseling about CMV prevention resulted in fewer women contracting the virus. In another study, pregnant mothers shown a video and offered hygiene tips were much less likely to get CMV (5.9 percent) than those not given information on prevention (41.7 percent).”
Several prevention education studies discussed in the article, “The Role of Prenatal Counseling in Preventing Congenital CMV,” conclude: "There is a substantial amount of evidence that pregnant women can reduce their risk of transmission through simple behavioral changes... " (The Massachusetts Congenital CMV Coalition).
According to the National CMV Foundation, “Congenital CMV infection is arguably the most common preventable cause of neonatal disability in the United States. More children will have disabilities due to congenital CMV than other well-known infections and syndromes, including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/AIDS.”
“This is a very common virus, but it remains somewhat under the radar. A woman can unknowingly acquire it during pregnancy, and pass the infection to the unborn baby,” states 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. ”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” (NYMetroParents, 2016).
Saunders of Baldwinsville is thrilled there is now a New York bill aimed at educating women at high risk about CMV Assembly Bill A7560, named “Elizabeth’s Law” in memory of Lisa and Jim Saunders’s daughter. In 2021, the Senate passed its equivalent bill, S6287A. In the article, "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness" (The Citizen, 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."
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. Watch CMV Ends With Me - Dr. Demmler-Harrison.
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...'" states Dr. Sallie Permar, Chair, Department of Pediatrics, Weill Cornell Medicine, and pediatrician-in-chief, New York-Presbyterian Komansky Children's Hospital, (Weill Cornell Medicine, 2021).
Saunders suggests five reasons why CMV has a PR (public relations) problem:
1) CMV education is not "part of standard prenatal care” (Washington Post, 2021);
2) Doctors don’t want to frighten, worry or “burden” patients (New York Times, 2016);
3) 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.” (Washing our hands of the congenital cytomegalovirus disease epidemic, Cannon and Davis, 2005).
4) Medical training downplays the dangers. Michigan pediatrician Megan Pesch, MD, was shocked when her third daughter was born with congenital CMV. Dr. Pesch states that "many health-care providers tend to minimize or ignore the risks. She says her own medical training downplayed the dangers...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).
5) Although 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), 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."
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.” When Saunders connected with a childcare center director willing to tell her employees about CMV, the director sent a memo to her staff according to the American Academy of Pediatrics (AAP) guidelines that state, “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.” Several months later, however, a volunteer at that 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)’ (Note: below this article is information on a court case involving a child care center that did not warn its employee about CMV).
Although educating women about CMV is a little extra work for organizations, the CDC has created CMV fliers in English and Spanish for distribution. There are now a few states that educate women about CMV. Utah passed a CMV education and testing law in 2013, directing the Utah Department of Health to create a public education program, which inspired the creation of the flier, “What childcare providers need to know about CMV” (available in English and Spanish). Those who work with children will also benefit from the CMV Training Module created by the University of Connecticut. Fliers created as attractive as wall posters from the National CMV Foundation 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 are also at increased risk for contracting CMV.
In 2018, in an effort to combat CMV in New York, Assemblymember Linda B. Rosenthal sponsored Senate Bill S2816. Signed by the governor, it helps diagnose children with congenital CMV by requiring “testing for cytomegalovirus of newborns with hearing impairments."
Although the 2018 CMV testing law includes mention of "public education," Lisa Saunders says the education isn’t reaching women of childbearing age or child care providers, who, though trained in infection control, are not educated about any particular childhood disease such as CMV–one that can be so devastating to their pregnancies. Saunders believes CMV information can be included in a child care provider's "Training Manual" in the "Safety" section where infection control is taught. Assuming they are taught how blood and bodily fluids are passed from one person to another, under the "Direct Contact"; "Bloodborne"; or "Indirect Contact" category, cytomegalovirus (CMV) could be added as an example infection with a brief definition of what CMV is and what it can do to a pregnancy. And/or, the topic of CMV could be included in "Universal Precautions" which explains when and how to wear gloves and wash hands. Mention of CMV should comply with instructions from the AAP's book, Caring for Our Children, which states, “child care staff members should receive counseling in regard to the risks of acquiring CMV from their primary health care provider. However, 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” (AAP et al., Staff Education and Policies on Cytomegalovirus).
Assemblymember Rosenthal hopes to improve CMV education with “Elizabeth’s Law” (Assembly Bill A7560/Senate Bill S6287A), which requires child care providers be trained on the dangers of congenital cytomegalovirus infection and methods of prevention, and requires certain physicians to distribute informational materials concerning cytomegalovirus. Assemblymember Rosenthal also sponsored the June 2021 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.”
Sara Menlove Doutre, the special education policy expert behind the first CMV law passed in the U.S. (Utah, 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). (To learn which states have or are working to have laws requiring CMV education and testing, visit: https://www.nationalcmv.org/about-us/advocacy)
New York's CMV Awareness Month 2021 Proclamation inspired an event in Lyons where 222 silver rocks were placed 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 likely contracted CMV through their caregiver/teaching occupations as neither had children of their own during their pregnancies. Jessica Keukelaar of Macedon is the mother of Kyleigh, born with congenital CMV in 2018 and Kristin Schuster of Canandaigua is the mother of Autumn, born with congenital CMV in 2015. Kristin told Saunders she had never heard of CMV or that she was at increased risk for the disease because of her occupation. She said, "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 placing the silver CMV rocks to the music video, “Had I Known) (about CMV), Lyrics and Music by Debra Lynn Alt”.
Lisa Saunders continues to use several avenues to raise awareness of CMV in hopes her daughter Elizabeth’s life, suffering and death will not have been in vain. The author of several articles and books on the topic, and influential in helping Connecticut pass a CMV testing law (Cornell Alumni Magazine: "In Memory of Elizabeth”, 2015), Lisa and her husband Jim, a recently retired Pfizer scientist, are walking across the State of New York 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 the importance of New York legislators passing “Elizabeth’s Law”. Spectrum News filmed their journey: "Couple pushes for law in memory of their daughter", which includes an interview with Dr. Sood. Saunders says, “We have now walked 139 miles so far--more than 1/3 of the way across upstate New York!” Always looking for ways to raise awareness, Saunders created a dramatic one-minute trailer of their trek: Erie Canal Trail Challenge to Stop CMV Birth Defects. Pass "Elizabeth's Law" - A7560/ S6287A
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Note:
Published legal cases involving CMV education include:
1) Connecticut: “The Center for Advanced Reproductive Services 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). Lawyers commented, “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. Court notes embedded here); and
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 Sydney Day Nursery 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).
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
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 version: "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.
Others trying to make a difference:
New York Times also published an article by mother Megan Nix, a non-fiction writer committed to seeing the eradication of congenital CMV. Titled, “My Daughter’s Silent Virus: Congenital CMV,” she stated, “To protect your baby from a disabling disease, first you have to know that it exists” (2017). Regarding her soon to be published book, “Remedies for Sorrow,” (Doubleday, February 2023), Nix states, “‘Remedies for Sorrow’ begins with our second daughter’s diagnosis with congenital CMV on a small, foggy island in Southeast Alaska and becomes an investigation of the American prenatal system today: Why aren’t our obstetricians discussing the number one cause of birth defects in an age of widespread vaccinations and advanced neonatal medicine? How is the American facade of having a perfect pregnancy putting us at greater risk of bearing children with lifelong disabilities?” (MeganNix.com)
Brenda K. Balch, MD, Connecticut's American Academy of Pediatrics (AAP) Early Hearing Detection and Intervention (EHDI) Chapter Champion, was instrumental in the passage of Connecticut’s House Bill 5525: "An Act Concerning Cytomegalovirus”. She testified in Hartford, “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).
According to the National CMV Foundation, “Congenital CMV infection is arguably the most common preventable cause of neonatal disability in the United States. More children will have disabilities due to congenital CMV than other well-known infections and syndromes, including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/AIDS.”
Not all countries neglect CMV prevention education. Italy is fortunate to have Dr. Sara Ornaghi who spent time studying at the Yale University School of Medicine in 2017. Now back in her home country, she 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 itI promoted the implementation of a cCVM screening program at my hospital (Foundation MBBM at San gerardo Hospital, University of Milan-Bicocca, Monza, Italy), targeting the newborns who fail the hearing screening as well as those who are born too small for their gestational age (birthweight or head circumference <10th percentile according to population based curves). This program is now up and running and has helped us in diagnosing some neonates with cCMV who otherwise would have been missed, since healthy-looking."--Sara Ornaghi, MD, PhD, Dept. of Obstetrics and Gynecology, MBBM Foundation at San Gerardo Hospital, University of Milan-Bicocca, Monza, Italy.
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 (she 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)
Brandi Hurtubise of Buffalo told the National CMV Foundation 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."
Saunders says, “Women have the right to know how to protect their pregnancies from CMV, a known cause of preventable birth defects. Without legislation aimed at battling CMV, there are too many obstacles women face to protect their pregnancies from CMV." Congenital CMV affects certain populations more than others. Watch this short video to learn more: https://fb.watch/bv3Zot2M17/ or read the following studies indicating that racial and ethnic minorities are at higher risk: 1) "Racial and Ethnic Differences in the Prevalence of Congenital Cytomegalovirus Infection", 2018; and 2) "Geographic Disparities in Cytomegalovirus Infection During Pregnancy, 2017).
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)
In 2018, in an effort to combat CMV, Assemblymember Linda B. Rosenthal sponsored Senate Bill S2816. Signed by the governor, it 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 (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."
Dr. Demmler-Harrison, who spearheads the National Congenital CMV Disease Research Clinic and Registry, will do almost anything to raise CMV awareness–from sporting a CMV license plate on her car to answering questions for mainstream media. When Katie Hou of “The Hou to Guide,” a podcast that focuses on special-needs parenting, asked Dr. Demmler-Harrison why she chose to focus 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 had a grant, studying congenital CMV. And, she put her arm around me and said, ‘I’d like you to be my post-doctoral fellow. And work on this project, looking at congenital CMV in pregnant women, and the long-term outcomes in their babies.’…So I slept on it. And thought about it for 24 hours. 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).
In addition to Gail J. Demmler-Harrison MD, the National CMV Foundation and Group B Strep International also provided letters of support for Elizabeth’s Law ( A7560/S6287A). Excerpts:
Amanda Devereaux RN, BSN, 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 of Iowa was shocked when her daughter Pippa, born in 2015, was diagnosed at 21 weeks gestation with congenital CMV. “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!” (National CMV Foundation Volunteer Spotlight).
Marti Perhach, co-founder of Group B Strep International (GBSI) and instrumental in successfully campaigning for universal screening for GBS (guidelines adopted within the U.S. in 2002), understands the importance of established protocols and health information. Her letter states that that Elizabeth’s Law is a "crucial piece of legislation that give childcare workers and women at their first prenatal visit the information needed to help protect their babies and families from the devastating yet largely preventable effects of congenital cytomegalovirus (cCMV).”