Join CMV New York to Prevent/Treat #1 Birth Defects Virus

Lisa Saunders holds her newborn Elizabeth born with a severely damaged brain from congenital CMV.

Dear Doctor, Parent, Researcher and other New Yorkers:

If you live or work in New York and want to prevent disabilities caused by the leading viral cause of birth defects, cytomegalovirus (CMV), or want all newborns tested for CMV at birth to catch babies who may need to be monitored for possible progressive hearing loss, please let me know at LisaSaunders42@gmail.com and tell me what county you live in and why you are interested in CMV. 

I am a former licensed child care provider who was unaware of my occupational risk for CMV. I also was the mother of a toddler and volunteered in my church nursery--all things that put my pregnancy at increased risk for CMV. I was never educated about the virus, before or during my pregnancy, and my daughter Elizabeth was born with a severely damaged brain from congenital CMV. She had cerebral palsy and was legally blind. Although she passed her newborn hearing test, she had a progressive hearing loss. She died during a seizure when we were living in Rockland County.  

I am delighted that New York passed a CMV law in 2018, but like Connecticut, the state I helped pass a CMV law in 2015, the NY law only tests newborns for CMV if they fail their hearing test: https://www.nysenate.gov/legislation/bills/2017/s2816/amendment/original . As you may be aware, babies born with asymptomatic congenital CMV often go undiagnosed because the hearing loss is gradual. 

The New York Newborn Screening Program can only test for diseases that will  "identify babies with certain disorders, which without intervention, may permanently impact newborns and their families." Babies born with congenital CMV can benefit from early intervention. The following two articles make the case for universal CMV screening: 1) "Universal newborn screening for congenital CMV infection: what is the evidence of potential benefit?" and 2) "Experts make the case for universal CMV screening". MORE ON THAT: 

1) "Universal newborn screening for congenital CMV infection: what is the evidence of potential benefit?": https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4494732/, Except: "We concluded that there is good evidence of potential benefit from nonpharmaceutical interventions for children with delayed hearing loss that occurs by 9 months of age. Similarly, we concluded that there is fair evidence of potential benefit from antiviral therapy for children with hearing loss at birth and from nonpharmaceutical interventions for children with delayed hearing loss occurring between 9 and 24 months of age and for children with CMV-related cognitive deficits. We found poor evidence of potential benefit for children with delayed hearing loss occurring after 24 months of age and for children with vision impairment. Overall, we estimated that in the United States, several thousand children with congenital CMV could benefit each year from newborn CMV screening, early detection, and interventions. "

2) "Experts make the case for universal CMV screening": www.healio.com/news/pediatrics/20190515/experts-make-the-case-for-universal-cmv-screening, Excerpt: "Most babies who are destined to have CMV-associated hearing loss will have normal hearing at birth,” Kimberlin said. “If you have a targeted screening approach, and let’s say that you test every single baby who fails their hearing screening for congenital CMV, you’re still missing most of the babies who are going to go on to develop CMV-associated hearing loss

Thankfully, the NY CMV law  requires CMV education, but I've recently learned that child care providers are still not being educated about their occupational hazard for it and that they should discuss this risk with their doctor or health department. 

Here is a sample of the letter I am sending out to New York agencies involved in child care and educational settings: 

I wanted to make you aware of the free tools available to help you follow the New York cytomegalovirus (CMV) law and OSHA's action on CMV in the child care setting. Below my signature are links to the CDC's English and Spanish fliers plus employer and employee training videos available from Cornell University and the University of Connecticut respectively. You should also be able to find help from the NY Department of Health as the New York CMV law directs it to "establish an education program for women who may become pregnant, expectant parents and parents of infants relating to various aspects of cytomegalovirus."   

According to OSHA (Occupational Safety and Health Administration), child care providers have an occupational hazard for CMV, the leading viral cause of birth defects. I know CMV is an "inconvenient truth" in the child care industry, especially given everyone's focus on Covid-19, but it must be dealt with before a teacher or child care provider comes to you asking why you never warned them about CMV so they could discuss their risk with their primary health care provider or health department. In a legal case involving a childcare worker and her severely disabled son versus the child care center where the mother worked, 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…"

HOWARD A. ZUCKER, M.D., J.D ,Commissioner of Health for New York State, stated in his monthly letter: "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... "  (August 2018). 

10 Reasons Why You Must Tell Caregivers/Teachers about CMV

1) According to OSHA, CMV is a "Recognized Hazard". OSHA states that all workers have the right to “receive information and training on job hazards, including all hazardous substances in your workplace.” 

2) OSHA and CMV: "Childcare jobs may involve contact with children infected with CMV or their saliva, nasal secretions, or excrement. CMV is spread through exposure to infected body fluids. Since a person with CMV may show no symptoms, childcare workers should utilize proper handwashing and sanitization procedures. Childcare workers should also use personal protective equipment (PPE), such as gloves, to help prevent exposure to body fluids” (www.osha.gov/SLTC/cmv/hazards.html).  

3) “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” (Staff Education and Policies on Cytomegalovirus (CMV), "Caring for Our Children: National Health and Safety Performance Standards; Guidelines for Early Care and Education Programs", American Academy of Pediatrics et al.).

4) Approximately 1 in 200 children are born in the U.S. with congenital CMV. The impact on the fetus may include deafness, blindness, cerebral palsy, developmental disabilities, seizures and even death (www.cdc.gov/cmv).

5) Congenital cytomegalovirus is a more common cause of disabilities than Zika, Down syndrome and fetal alcohol syndrome.  CMV is the leading viral cause of birth defects.

6) CMV is a viral infection that is common in children. Up to 70% of children ages 1-3 years in group care settings excrete CMV. The New York Health Department website states, "In daycare centers, where hand washing practices may not be as good, there may be a greater risk of infection...Pregnant women working in child care facilities should minimize direct exposure to saliva and avoid kissing babies or young children on the mouth. Hugging is fine and is not a risk factor...." Information is provided in English and Spanish at: https://www.health.ny.gov/diseases/communicable/cytomegalovirus/fact_sheet.htm    

7) 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). Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014). 

8) Child care providers serving children receiving assistance through the Child Care and Development Fund program must receive training on topics covered by the Child Care and Development Block Grant Act of 2014. “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)” (Caring for Our Children Basics).

9) Child care providers accredited by National Association for the Education of Young Children should already be familiar with the document, “NAEYC Early Childhood Program Standards and Accreditation Criteria & Guidance for Assessment,” which acknowledges the need to "reduce occupational hazards such as infectious diseases (e.g., exposure of pregnant staff to CMV…)”

10) Potential Cost of Not Warning Workers 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, 2017)

About me: I am a former licensed in-home child care provider unaware of my occupational hazard for CMV until it was too late to help my daughter Elizabeth born with a severely damaged brain from congenital CMV. I was stunned to learn after Elizabeth's birth that caregivers/teachers of toddlers were at greater risk for CMV. Elizabeth was deaf/blind, profoundly mentally impaired, and had cerebral palsy. She died at 16 during a seizure in 2006. If I had known about my increased risk for CMV during my child care licensing training, I would have been more careful to follow the hygiene guidelines, would not have tried to save time by using diaper wipes to clean hands and surfaces, and perhaps I would have only cared for children over two if I received a blood test showing I had no antibodies for CMV.   In 2015, I helped Connecticut pass a CMV law, which was covered in Cornell Alumni magazine: "In Memory of Elizabeth: Her daughter’s death from a preventable disability spurs Lisa Avazian Saunders ’82 into action."

   

If you need help presenting this material or have any questions, please feel free to contact me.

Thank you in advance for your help!

Sincerely,

Lisa Saunders, CMV Policy Advocate

Baldwinsville, New  York

PSA: "Had I known (about CMV)

Author of:

• Help Childcare Providers Fight CMV: Protect Newborns from #1 Birth Defects Virus
• Once Upon a Placemat--A Table Setting Tale: Coloring Book and CMV Prevention Tool
•  Anything But A Dog!: The Perfect Pet For A Girl With Congenital Cmv  (English and Japanese)

CMV EDUCATIONAL TOOLS

FLIERS/POSTERS

Centers for Disease Control and Prevention (CDC)
“CMV Fact Sheet for Pregnant Women and Parents
English: https://www.cdc.gov/cmv/downloads/cmv-parents-fact-sheet-508.pdf
Spanish: https://www.cdc.gov/cmv/downloads/cmv-parents-fact-sheet-sp-508.pdf

National CMV Foundation
Wall Poster “Are You Pregnant?”:
https://www.nationalcmv.org/NCMVF/media/ncmvf/download-content/CMV_Awareness-Flyer_11x17.pdf?ext=.pdf

PRESENTATIONS

For Caregivers/Teachers/Educators: 

"CMV Training Module Video": https://aural.rehab.uconn.edu/cmv-training-module/
(This work was supported by the AUCD and the LEND Pediatric Audiology Program made possible through a Cooperative Agreement with the Health Resources and Services Material Child Health Bureau (MCHB) grant awarded to the University of Connecticut A.J. Pappanikou Center for Excellence in Developmental Disabilities (Grant #3T73MC30115-01-01) in consultation with Child

For Employers:

1. 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. Available from: https://digitalcommons.ilr.cornell.edu/conference/45/

2. Vimeo: https://vimeo.com/450219803

3. Download video workshop: https://vimeo.com/user43999427/download/450219803/e5b7be27db

This publication/presentation is by Nellie Brown, MS, CIH, Certified Industrial Hygienist, and Director, Workplace Health and Safety Program, Worker Institute, Cornell University – ILR School. The information in this training program was originally developed for The Center for Occupational & Environmental Medicine at the Erie County Medical Center (ECMC), 462 Grider St., Buffalo, NY 14215.  Permission to make this training program available online granted by The Center for Occupational & Environmental Medicine. For further information, or to ask about a Q and A over Zoom, contact Nellie Brown at: njb7@cornell.edu.

NOTE TO THE MEDIA:

Need to quote an expert or a parent of a child born with congenital CMV?

New York, NY

The 2018 CMV New York law was authored by:  Assemblywoman Rosenthal: https://nyassembly.gov/mem/Linda-B-Rosenthal, 230 West 72nd Street, Suite 2F, New York, NY 10023, p. 212.873.6368, f. 212.873.6520. Email: Lauren Schuster, Esq., Chief of Staff,

Assemblymember Linda B. Rosenthal: schusterl@nyassembly.gov

Upstate Medical: Researchers/Professors:

Dr. Jennifer Moffat(MoffatJ@upstate.edu), 

Dr. Eain Murphy (MurphyE1@upstate.edu) 

Dr. Gary Chan (Chang@upstate.edu). He received a large grant from NIH (National Institute of Health) to study CMV:

HEALTHLINK ON AIR RADIO INTERVIEWS
10/2/14 Human cytomegalovirus (HCMV)
10/01/14 Human cytomegalovirus (HCMV)

Nellie Brown, MS, CIH (njb7@cornell.edu), Director of Workplace Health & Safety Programs, Lead Programs Manager, Certified Industrial Hygienist, The Worker Institute Buffalo, NY, ILR School, Cornell University (www.ilr.cornell.edu.) Brown is author of "Occupational exposure to cytomegalovirus (CMV): Preventing exposure in child care and educational settings, including OSHA advisories. Ithaca, NY: Cornell University, ILR School." Available from: https://digitalcommons.ilr.cornell.edu/conference/45/

Erie County

Angela Cote, CMV Mom (angelamariep23@yahoo.com):  "I was a nanny then I had my first daughter and I continued watching children. I became pregnant with my second and she is my congenital CMV baby. I’m not sure if I contracted it for the first time or if it was a reactivation. With me being a nanny and having a toddler, I feel like it must have been reactivation, but I’ll never know. I never had any blood work done until this past year, when out of curiosity,  I asked for my levels to be checked. This link tells our story: https://www.sunshineandshattereddreams.com/post/angela-and-elise".

Brandi Hurtubise, CMV Mom (bhurtubise88@gmail.com): "My daughter is Samantha. She was born with congenital CMV, and as a result, has spastic quad cerebral palsy, microcephaly, epilepsy, hearing loss in both ears, cortical visual impairment (CVI), epilepsy, and a feeding tube. I'd love to help." See: https://www.instagram.com/stronglikeamomma/

Nellie Brown, MS, CIH (njb7@cornell.edu), Director of Workplace Health & Safety Programs, Lead Programs Manager, Certified Industrial Hygienist, The Worker Institute Buffalo, NY, ILR School, Cornell University (www.ilr.cornell.edu.) Brown is author of "Occupational exposure to cytomegalovirus (CMV): Preventing exposure in child care and educational settings, including OSHA advisories. Ithaca, NY: Cornell University, ILR School." Available from: https://digitalcommons.ilr.cornell.edu/conference/45/

Onondaga County

Lisa Saunders, CMV Mom (LisaSaunders42@gmail.com): "My daughter Elizabeth (1989-2006) was born with a severely damaged brain from congenital CMV. She had microcephaly, cerebral palsy, epilepsy, hearing loss and cortical visual impairment. She died during a seizure when we lived in Rockland County. Although I was a licensed child care provider, my training for certification did not include education on my occupational hazard for CMV. I was also a church nursery volunteer and the mother of a toddler--other things that increased my risk for CMV. If only I had known about CMV. See my  PSA: "Had I known (about CMV).