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

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

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

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

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

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

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

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

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

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

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

Most caregivers/teachers are still unaware of CMV because:

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

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

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

4) CMV is a “silent virus” that goes largely undiagnosed, so even the medical community isn't fully aware of how common it is: "The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed.” (Washing our hands of the congenital cytomegalovirus disease epidemic, Cannon and Davis, 2005).

5) Medical training downplays the dangers. Michigan pediatrician Megan Pesch, MD, was shocked when her third daughter was born with congenital CMV. She stated that  "many health-care providers tend to minimize or ignore the risks." She said, "I went back and looked at my notes at what I’d learned in residency and medical school, and what we learned was so rudimentary and basic...”(Washington Post, 2021).

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

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

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

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

Although there are several organizations geared to childcare providers that mention CMV, the information is not actually appearing in the training and/or packets of information given to new  hires or volunteers. In the U.S., “61 % of children under the age of 5 are cared for in a child care facility...Intervening with child care providers and parents through child care facilities are key opportunities to reduce prevalence of CMV infection and other diseases” (Thackeray and Magnusson, 2016). 

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

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

 

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

Sincerely,

Lisa Saunders

Baldwinsville, NY 

New York Stop CMV

AuthorLisaSaunders.com

About Lisa's CMV work

RESOURCES TO HELP EDUCATE CHILD CARE PROVIDERS

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

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

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

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

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

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

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

7. Moderna:  www.nowiknowcmv.com

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

###

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

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

NOTE 1

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

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