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).
New York Stop CMV Project
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).
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."
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."
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).
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).
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)
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
2008 International Congenital CMV Conference sponsored by the CDC and the Congenital CMV Foundation.
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).
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).
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)
- CMV: Virus causing deafness in newborns, WGRZ-TV, 2017.
- 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" :
Above-sink wall flyer for hand-washing, "Diaper Wipes Don't Kill CMV"
For children to color in: "Share a Meal Not the Germs":
2) Wall Flyer For Women Who Care for Toddlers:
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.
SUGGESTED LESSON PLAN FOR CHILDREN
- 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).