Monday, January 20, 2020

New Yorkers Educating Teachers, Child Care Providers, Pregnant Moms on Toddler's CMV, #1 Birth Defects Virus

I just moved back to the State of New York (Baldwinsville, outside Syracuse) and am looking to find and work with CMV prevention advocates in New York. I currently collaborate with several other people/organizations that work to prevent birth defects such as Cornell University (my alma mater), Congenital CMV Disease Research Clinic & Registry,
National CMV Foundation  and New England Consortium on Deafblindness (NEC)


Lisa Saunders with her daughter Elizabeth born with congenital CMV in 1989.

My CMV background


My 16-year-old daughter Elizabeth was pronounced dead at Nyack Hospital, New York, from a seizure. She was born with a severely damaged brain in 1989 from congenital CMV (cytomegalovirus), the leading viral cause of birth defects (according to the CDC, 1/200 babies are born with congenital CMV). I was a licensed in-home childcare provider when pregnant with Elizabeth and nowhere in my required licensing training was my occupational risk for CMV mentioned. CMV is a common virus excreted by up to 70% of otherwise healthy toddlers who are in group care. For those with a healthy immune system, CMV has no or few symptoms. If a pregnant woman contracts CMV, however, it can cause the baby to be born with brain damage, cerebral palsy, hearing loss and blindness. Elizabeth was a very sweet, loving girl, but she did suffer through several surgeries and uncontrollable epilepsy. 


According to the American Academy of Pediatrics (AAP), "With regard to [CMV] child-to-staff transmission, studies have shown increased rates of infection with CMV in caregivers/teachers ranging from 8% to 20%... Meticulous hand hygiene can reduce the rates of infection by preventing CMV transmission. With current knowledge on the risk of CMV infection in child care staff members and the potential consequences of gestational CMV infection, 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..." 


A child care study showed that most workers didn't know about CMV and many admitted to using diaper wipes to clean surfaces and clean hands after handling saliva or urine 
(Thackeray and Magnusson, 2016). They must be educated that diaper wipes do not effectively remove CMV from hands. 

According to the AAP, children with known CMV should not be excluded from group care; "CMV excretion is so prevalent that attempts at isolation or segregation of children who excrete CMV are impractical and inappropriate" (Red Book, 2015, pg 145.) However, in other countries such as Australia and Germany, allow pregnant staff to change responsibilities to work with children over the age of two (or three in Germany). 

Since my daughter's death in 2006, I have devoted my spare time to educating women of childbearing age about CMV--especially after waking from a tormenting dream about why I hadn't done more to shout CMV prevention from the rooftops. Shortly after my husband and I moved to Connecticut in 2010, I received an email from a grandmother heartbroken that the 18-year-old mother of her grandson born with a small, damaged brain hadn't been educated about CMV when she interned at a child care center. When I visited the family in the hospital, the nurse who cared for her grandson asked me why more wasn't being done to tell women how to reduce their chances of contracting CMV.  She asked me to please do what I could to change that. 

Using the song,"Had I Known (about CMV)," by Debra Lynn Alt, I created a public service announcement (PSA) on Congenital CMV: Music Video--"Had I Known (about CMV)". The video is geared to those who care for young children. YouTube version at https://youtu.be/1WoGjfieRhY. You are welcome to share this on TV, online, in presentations, etc.

I'm surprised that most women who work with children are not aware of CMV, especially since that can lead to lawsuits against an institution. Although the only lawsuit against a child care center that I know about in the U.S. settled out of court (so there is no public record of it), in New South Wales, “a childcare worker and her severely disabled son were awarded $4.65 million. 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)” (Queensland Government, Australia). Meridian Lawyers stated: "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..."

In 2015, I was instrumental in helping Connecticut become the second state in the U.S. to pass a law requiring CMV testing for infants who fail their mandatory hearing screen. This testing means earlier interventions are available for those who show a hearing loss at birth. The Cornell Alumni Magazine published my story: "In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action" (2015).

The Connecticut CMV law has been responsible for getting CMV prevention posted on the CT Department of Public Health website, but prevention education  for all woman of childbearing age is still not happening. As of this writing, although the CT Office of Early Childhood now as CMV prevention on its website, child care providers and early childhood educators are still largely unaware of their occupational hazard for CMV. 


In 2016, I reached out to OSHA about CMV in the workplace and asked if they could look into it. In May 2019, OSHA announced: "A common virus, Cytomegalovirus (CMV) affects thousands of workers in childcare centers and healthcare facilities. These workers are at the greatest risk of exposure because the virus is often spread through saliva and other body fluids of young children. OSHA's new webpage on CMV [https://www.osha.gov/SLTC/cmv/], explains how to minimize health risks associated with workers' exposure to this virus" ("QuickTakes," OSHA's newsletter on workplace safety and health). 


In 2017, I contacted Cornell University's Industrial Labor Relations college and asked if they could help educate those who work with children about their occupational risk. They put me in touch with 
Nellie Brown, MS, CIH, Director of Workplace Health & Safety Programs, Lead Programs Manager, Certified Industrial Hygienist, The Worker Institute, 617 Main St. – Suite 300, Buffalo, NY 14203. ILR School, Cornell University, t. 716 852 1444 x111, njb7@cornell.edu | www.ilr.cornell.edu.


Nellie and I have been corresponding regularly on this issue. She presented the topic at an American Industrial Hygiene Association conference where I was presenting (Connecticut River Valley, Oct. 3, 2019), and Cornell's Digital Commons just published a pdf of her PowerPoint presentation: Brown, Nellie 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, Workplace Health and Safety Program.  https://digitalcommons.ilr.cornell.edu/conference/45/  (She gives permission for others to present it. Just email her at njb7@cornell.edu).


In 2018, I was delighted to learn New York passed a CMV law: https://www.nysenate.gov/legislation/bills/2017/s2816/amendment/original .Does anyone know how the State of New York is educating their workers about CMV exposure and if they are educating all women of childbearing age who have or work with toddlers about CMV? I see the NY Health Department has a link on CMV: 

https://www.health.ny.gov/diseases/communicable/cytomegalovirus/fact_sheet.htm

I found this letter from the Commissioner of Health for New York StateHOWARD A. ZUCKER, M.D., J.D, to "Colleagues". Excerpt: "As healthcare providers of women of reproductive age or pregnant patients, we may not be giving as much attention as we should to CMV...Congenital CMV infection is the most common intrauterine infection and the leading non-genetic cause of sensorineural hearing loss in children in the U.S...For all infants, it is critical that healthcare providers include careful follow-up of newborn hearing screen results and ensure subsequent auditory evaluation, when recommended, as a part of routine infant care. For newborns with hearing loss without another etiology, consider evaluation for congenital CMV. However, the majority of infants who ultimately develop congenital CMV-associated sensorineural hearing loss (whether they are symptomatic or asymptomatic at birth) will not have detectable hearing loss during the first month of life. Therefore, efforts aimed at the prevention of CMV infection during pregnancy are key to avoid the significant sequelae of congenital CMV infection, including hearing loss...People who have frequent contact with young children may be at greater risk of CMV infection. CMV can be present in especially high amounts in young children's saliva and urine for months after they become infected. While exposure to CMV may be difficult to avoid, particularly for those who have young children already, it is imperative that we give women of reproductive age the information they need to make informed decisions for themselves and their families.. According to the Centers for Disease Control and Prevention (CDC), female workers of reproductive age in child care centers should be educated on CMV and its potential risks, and should have access to appropriate hygiene measures to minimize occupationally-acquired infection... " https://www.health.ny.gov/commissioner/letters/docs/2018-08.pdf  (August 2018) 


I believe New York child care workers are trained through the Office of Children and Family Services. If you want to contact your regional office to find out how they are educating their workers about CMV, find the contact info at: https://ocfs.ny.gov/main/childcare/regionaloffices.asp


If you want to provide CMV training tools and/or resources to others, please see below my signature. I also include several ideas for how to raise awareness. 

Thanks so much for your time! 

Lisa Saunders

CMV Education Advocate
Baldwinsville, NY
LisaSaunders42@gmail.com


CMV Training Tools/Resources


1.   Centers for Disease Control and Prevention (CDC) CMV info available in English and Spanish:
"Congenital CMV Facts for Pregnant Women and Parents"

2.  "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. You can download that page as a pdf by clicking on the upper right side of the webpage: "Save as PDF" or click here: https://drive.google.com/file/d/1n7kI3hnsaZvYV-GYtrPMYQjmA-ZhP43w/view?usp=sharing
See also  American Academy of Pediatric's Red Book: 2015 Report of the Committee on Infectious Diseases pgs 144-145.)

3. CMV prevention video, "Why Moms-to-be Should Care About CMV" (3:37-minutes): https://youtu.be/OM7WKS7J2mA (content by research nurse, Anna Bartholomew of central Ohio; video by Joel Copeland, Chief Operating Officer of KMI Learning, pro bono, Youtube,  2015).


4. National CMV Foundation features several types of CMV flyers for downloading and hanging on your wall such as: https://www.nationalcmv.org/NCMVF/media/ncmvf/download-content/CMV_Awareness-Flyer_11x17.pdf?ext=.pdf

5. Utah created English/Spanish brochures specifically for childcare providers:
6. UCONN Provides CMV Training Video and Quiz
The University of Connecticut recently came out with a CMV training module for child care providers.  The link to the video and quiz:  https://aural.rehab.uconn.edu/cmv-training-module/  

6. The Idaho CMV Advocacy Project (they got a CMV law passed) links to these training resources:

Are you wanting to inform someone about CMV but don’t know how? Maybe your child’s teacher? Your daycare? Your nurses? Each of these links takes you to some great, shareable videos!
  1. The perfect 1 minute overview.
  2. CMV Parent Stories
  3. Training for childcare workers with follow up quiz
  4.  CMVirus Pledge (RUSP support)
  5. Training for Alabama Pediatricians and other Healthcare Providers- Congenital CMV Update: Diagnosis and Management
For any updates from them: https://idahocmv.com/videos-tools-for-education/?fbclid=IwAR0fnbBXrQX-xVFYr46AoZbnK7UkXaKPVpB1j2oFbMoq51a2i3pgDFZdEhY

7. Pdf of  PowerPoint presentation: Brown, Nellie 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, Workplace Health and Safety Program.  https://digitalcommons.ilr.cornell.edu/conference/45/  (She gives permission for others to present it. Just email her at njb7@cornell.edu).

8. Connecticut Department of Public Health (CT DPH) website has flyers and information: http://portal.ct.gov/DPH/Family-Health/EHDI/CMV. The National CMV Foundation allowed the CT DPH to embed their logo in their “Are You Pregnant” National CMV Awareness Flyer.
You may wish to distribute the above flyer with this letter from Dr. Brenda Balch on the back:
https://drive.google.com/file/d/1xjQKI8SE1awlHPdD-k27ZwG62W7dnlv3/view?usp=sharing

Letters to medical community:

CT Department of Public Health (DPH) About CMV For Obstetric Health Care Providers and About CMV Testing for Obstetric Health Care Providers.

CT Department of Public Health (DPH) and American Academy of Pediatrics (AAP) About CMV for Pediatric Care Providers


Click here to view the National Center for Hearing Assessment and Management (NCHAM) pre-recorded Congenital CMV 101: From Prevention to Treatment webinar or click here for a PDF of the webinar.

For social media, a photo of the flyer will be easier to share. Find the jpeg of “Are You Pregnant” by the National CMV Foundation at:
https://drive.google.com/file/d/1AVG9RXGVsbBTwOImOb18NWDdG3rHbHbm/view?usp=sharing

If you need a pdf of the above flyer with information relevant for childcare providers from CT DPH, then: https://drive.google.com/file/d/0B9Klfxar2CmjemlkcElQQkZfQWs/view)

9. Song for mothers who learned too late about protecting their unborn child from congenital CMV--"Had I Known (about CMV): by Debra Lynn Althttps://drive.google.com/file/d/0B9Klfxar2CmjRGN0cnBNQXRDdExMQWJOVHVZRGR1aWFJX0lJ/view

Using the song,"Had I Known (about CMV)," I created a public service announcement (PSA) on Congenital CMV: Music Video--"Had I Known (about CMV)". The video is geared to those who care for young children. YouTube version at https://youtu.be/1WoGjfieRhY. You are welcome to share this on TV, online, in presentations, etc.



10. Article, "The Danger of Spreading CMV: How We Can Protect Our Children" by Lisa Saunders published by ChildCare Aware of America (June 2017).

11. Article, “Help Childcare Providers Fight CMV” by Lisa Saunders published by National CMV Foundation (March 5, 2018)

13. Daycare.com: Cytomegalovirus webpage:  https://www.daycare.com/fastfacts/illness/cytomegalovirus.html

Other ideas:

Check your state’s childcare care licensing department, department of health, department of labor, and local universities with occupational medicine and public health programs. CMV is a bloodborne Pathogen. See Occupational Safety and Health Administration (OSHA) for bloodborne pathogens: https://www.osha.gov/OshDoc/data_BloodborneFacts/bbfact01.pdf  

Potential Cost of Not Warning Child Care Providers about CMV
In New South Wales, “a childcare worker and her severely disabled son were awarded $4.65 million. 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)” (Queensland Government, Australia). Meridian Lawyers stated: "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..."

Actions to consider:

1) Childcare providers are typically trained in first aid, CPR, and other topics. CMV prevention should be included in training about preventing infectious diseases. NAEYC (National Association for the Education of Young Children) includes "a. steps to reduce occupational hazards such as infectious diseases (e.g., exposure of pregnant staff to CMV…” 

2) Give each childcare employee/volunteer a CMV brochure (see Utah's brochure for childcare providers). 

3) CMV prevention added to a childcare center’s handbook. See Staff Education and Policies on Cytomegalovirus(Caring for Our Children, AAP, et al.): "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.” Print "Staff Education and Policies on CMV" by clicking "Save as PDF" at: nrckids.org/CFOC/Database/7.7.1.1 

4) CMV information added to a New Staff Orientation Form. The form should be signed to show the childcare provider read and understood they should consult their healthcare provider about their risk for CMV. See sample wording in Model Child Care Health Policies, which 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)” (American Academy of Pediatrics, Pennsylvania Chapter, Aronson, SS, ed., 2014, p. 116). 

5) The Child Care and Development Block Grant Act of 2014 has created regulatory changes. The Administration for Children and Families published Caring for our Children Basics (based on Caring for Our Children) in 2015 to “align basic health and safety efforts across all early childhood settings." In the section, “Prevention of Exposure to Blood and Body Fluids,” it states: “Caregivers and teachers are required to be educated regarding Standard Precautions [developed by CDC] before beginning to work in the program and annually thereafter. For center-based care, training should comply with requirements of the Occupational Safety and Health Administration (OSHA).”

6) Hang signs about CMV prevention in child care centers so staff and parents can see them (see CMV resources below--for Connecticut DPH logo in the “Are You Pregnant” poster by the National CMV Foundation, click here). Signs in child care centers are important because mothers of young children in group care are also at increased risk for contracting CMV (Pass et al., 1986) and are unaware of this. "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).

7) Consider the protocol posted on the website in Queensland, Australia. They relocate workers who are pregnant, or “expect to become pregnant, to care for children aged over two to reduce contact with urine and saliva.” See their list of safety measures in “Cytomegalovirus (CMV) in early childhood education and care services,” on the Workplace Health and Safety webpage.

8) Examples of CMV Protocols in Other Countries: 
In Queensland, Australia, suggested control measures include: "relocating workers who are pregnant, or who expect to become pregnant, to care for children aged over two to reduce contact with urine and saliva" (Queensland Government). 

In Germany, to protect day care workers from primary CMV infection, their “CMV serostatus must be checked at the beginning of their pregnancy.” If the worker “is seronegative, she is excluded from professional activities with children under the age of three years” (Stranzinger et al., 2016).
Websites:

For more information on Cytomegalovirus (CMV) and Congenital CMV Infections, visit the Centers for Disease Control and Prevention at https://www.cdc.gov/cmv or the National CMV Foundation at https://www.nationalcmv.org
         Handwashing: Centers for Disease Control and Prevention (CDC) has a video and posters on handwashing procedures and what to do if soap and water are not available: https://www.cdc.gov/handwashing/index.html

        Materials produced by me, 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"
        https://drive.google.com/file/d/1wcGpHOfu3lLKl9vYR_KhI5LIqI_h1tvC/view?usp=sharing

        For children to color in version: "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.

        5) Book, Help Childcare Providers Fight CMV: People can click here for the free 133-page pdf manuscript or at:



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