Tuesday, March 16, 2021

Women's CMV Rights: Women have the right to know how to protect their pregnancies from CMV



Lisa Saunders, whose daughter was born with brain damage from congenital CMV, is raising awareness on the Erie Canalway/Empire State Trail in New York. Everyone can join the fight to protect the unborn children of friends and family. See "Calls to Action" below.

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Dear Readers:

We hope this "Declaration of Women's CMV Rights and Sentiments," written in Baldwsinsville, New York, along the Erie Canalway National Heritage Corridor, will be embraced in every part of the country as was the Women's Rights movement, also launched along the Erie Canalway National Heritage Corridor in Seneca Falls in 1848. In 2000, Congress established the Erie Canalway National Heritage Corridor because it was “instrumental in the establishment of strong political and cultural ties between New England, upstate New York and the old Northwest and facilitated the movement of ideas and people ensuring that social reforms like...the women’s rights movement spread across upstate New York to the rest of the country...”

Declaration of Women's CMV Rights 

and Sentiments

(Inspired by Women's Rights Declaration of Sentiments,  July 20, 1848)


We, the undersigned, hold these truths to be self-evident; that women are created with certain inalienable rights; that among these are life, liberty, the pursuit of happiness, and the right "to enjoy the highest attainable standard of physical and mental health" (Amnesty International), and the right to protect their pregnancies from infections and all other known causes of preventable birth defects. We believe women have the right to be educated about CMV (cytomegalovirus), the leading viral cause of birth defects, and how to reduce their chances of contracting it before and during their pregnancies.

According to the Centers for Disease Control and Prevention (CDC), "Cytomegalovirus (pronounced sy-toe-MEG-a-low-vy-rus), or CMV, is a common virus that infects people of all ages. Over half of adults have been infected with CMV by age 40. Most people infected with CMV show no signs or symptoms. When a baby is born with cytomegalovirus (CMV) infection, it is called congenital CMV. About one out of every 200 babies is born with congenital CMV infection. About one in five babies with congenital CMV infection will have long-term health problems" (cdc.gov/cmv). These health problems include, but are not limited to, hearing loss, intellectual disability, vision loss, seizures, and lack of coordination or weakness.

Congenital CMV (cCMV) is the "most common non-genetic cause of birth defects and the leading cause of sensorineural hearing loss. Shockingly, 91% of women have never heard of cCMV, despite its prevalence..." (Colleran, 2020).

Women contract CMV from the infected bodily fluids of others. In many cases of congenital CMV, the newborn's mother contracted CMV from an otherwise healthy toddler in her care--just prior to or during her pregnancy. The American Academy of Pediatrics (AAP) states, "Spread of CMV from an asymptomatic infected child in child care to his or her pregnant mother or to a pregnant child care provider, with subsequent transmission to the fetus, is the most important consequence of child care related CMV infection. Children enrolled in child care programs are more likely to acquire CMV than are children primarily cared for at home" (Red Book, AAP, 2015).

In 2020, the American Academy of Pediatrics provided these startling figures: " up to 70% of children 1-3 years of age who attend child care may shed virus in saliva or urine. CMV and parvovirus infections may have effects on the fetus of a pregnant child care worker, and those employed in child care should discuss this occupational risk with their health care providers (Red Book, AAP, 2020).

According to the American College of Obstetricians and Gynecologists, "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, including wearing gloves when changing diapers. Frequent handwashing also is recommended. Pregnant women with young children at home also are at risk and should take these steps"(acog.org).

Some medical providers, however, feel they should not bring up CMV with pregnant women. A New York Times article revealed that the American College of Obstetricians and Gynecologists (ACOG), feel "there is no point in worrying expecting women about the virus... Guidelines from ACOG suggest that pregnant women will find CMV prevention “impractical and burdensome,” especially if they are told not to kiss their toddlers on the mouth — a possible route of transmission."(Saint Louis, 2016).

This thinking has to change. We believe women have the right to learn about CMV and how, if possible, it can be avoided. In one study, an 84% decrease in congenital CMV infection was found in pregnant women who received prenatal counseling about hygiene precautions (Revello, 2015).

We believe that public health departments, employers and the medical community have an ethical obligation to inform women how to reduce birth defects. "Individual women have the right to know that, under ideal conditions, risk of child-to-mother CMV transmission can be reduced by proper hygienic practices" (Cannon and Davis, 2005). Organizations and individuals can help educate women about CMV prevention with free flyers and online presentations available in English and Spanish from the CDC, National CMV Foundation, universities, hospitals and Departments of Public Health.

The CDC states, "You may be able to lessen your risk of getting CMV by reducing contact with saliva and urine from babies and young children. The saliva and urine of children with CMV have high amounts of the virus. You can avoid getting a child’s saliva in your mouth by, for example, not sharing food, utensils, or cups with a child. Also, you should wash your hands after changing diapers" (cdc.gov/cmv). Other prevention tips include washing hands after picking up toys (nationalcmv.org).

In 2011, the Senate designated June as National CMV Awareness month and "Recommends that more effort be taken to counsel women of childbearing age of the effect this virus can have on their children." The CDC annually observes the June National Cytomegalovirus (CMV) Awareness Month by featuring educational materials to increase awareness of CMV, "the most common infectious cause of birth defects in the United States."

Child care providers are largely unaware of CMV, despite their occupational hazard for the virus 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).

"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," stated Howard A Zucker, M.D., J.D., Commissioner, NY Department of Health (2018).

“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” (Gail J. Demmler-Harrison, MD, “CMV In Pregnancy: What Should I Know?,” 2014).

We believe women have the right to learn about CMV before pregnancy so they can make decisions about their occupation or child care choices if a mother of a toddler. Caregivers/teachers have an occupational risk for CMV because of increased exposure to bodily fluids. If the pregnant woman is a working mother of a young child, she should be aware of the risks of placing her young child in group care and carefully follow infection prevention protocols to minimize the risk of contracting CMV.

Employers of women of childbearing age have a responsibility to educate their employees in childcare, health care and early education professions about CMV. According to the Occupational Safety and Health Administration (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.” 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” (osha.gov).

Child care licensing agencies should instruct child care centers and preschools to educate staff about CMV. The American Academy of Pediatrics suggests a document 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, Model Child Care Health Policies, p. 116). (https://d3knp61p33sjvn.cloudfront.net/2015/01/AAP_Model_Child_Care_Health_Policies.pdf.pdf)

Policy for caregivers/teachers from the American Academy of Pediatrics: “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...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)). (https://nrckids.org/CFOC/Database/7.7.1.1)

Children born with congenital CMV also have rights. "CMV excretion is so prevalent that attempts at isolation or segregation of children who excrete CMV are impractical and inappropriate. Similarly, testing of children to detect CMV excretion is inappropriate, because excretion often is intermittent and results of testing can be misleading. Therefore, use of Standard Precautions and hand hygiene are the optimal methods of prevention of transmission of infection" (Red Book, AAP, p.145). (https://redbook.solutions.aap.org/DocumentLibrary/Red%20Book%202015%201.pdf)

Closing remarks

Now, because women feel themselves aggrieved and fraudulently deprived of their sacred right to protect their unborn children from the leading viral cause of birth defects, we shall use social media and "circulate tracts, petition the State and national Legislatures, and endeavor to enlist the pulpit and the press in our behalf" (Women's Right's "Declaration of Sentiments,"1848).

CALL TO ACTION

Because counseling women about CMV is not part of a doctor's "medical standard of care" in the United States, it is up to the public to prevent the #1 birth defects virus. Sample actions can include:

1) Signing this "Declaration of Women's CMV Rights and Sentiments" below in comments.l

2) Share with friends, family and social media the educational materials provided by the CDC, such as the flyer, “CMV Fact Sheet for Pregnant Women and Parents," available in English and Spanish (cdc.gov/cmv/downloads/cmv-parents-fact-sheet-508.pdf).

3) Join forces with the National CMV Foundation. Add your hands to the "Stop CMV Hands Campaign." Photograph your "Stop CMV" hands under your hometown street or state trail signs so legislators can see where you live. Share these photographs with your legislators, asking them to improve CMV prevention education through their Public Health Departments. Share your Stop CMV hand photos on social media with the hashtag, #StopCMV. Looking for families affected by CMV in your state? Visit:https://www.nationalcmv.org/resources/parent-stories

Signers of the Declaration of Women's CMV Rights and Sentiments​

(If you support this, post in comments below with your name and state. Under Colorado, you will find Elaine Angelo, the mother of a child born with congenital CMV and the granddaughter of first woman to vote in New York)


New York
*Lisa Saunders, Editor, Declaration of Women's CMV Rights and Sentiments, cCMV Mom and former licensed child care provider 
James P. Saunders, M.S., retired Pfizer scientist and cCMV Dad
Kristin Schuster, cCMV Mom and former Inclusion Preschool Teacher
Brandi Hurtubise, cCMV Mom
Madeline Cuddy, cCMV Mom
Kimberly Perth, cCMV mom
Mary Ann Avazian, cCMV Grandma
Heather McMahon

Massachusetts
Vanessa Colleran, M.Ed, Massachusetts Congenital CMV Coalition Member, cCMV Mom, Special Education Teacher
Peter Colleran, M.S., Certified Physician Assistant and cCMV Dad
Tracy Evans Luiselli, Ed.D., Massachusetts Congenital CMV Coalition Member, Teacher of the Visually Impaired
Cheryl, cCMV grandmother

Alabama
Sue Bentley, cCMV great-grandmother

California
Connie, cCMV Mom

Colorado
Elaine Angelo, cCMV Mom and granddaughter of first woman to vote in New York, Florence Chauncey on Jan. 5, 1918.

Florida
Candice, cCMV Mom, daycare teacher

Illinois
Elaena Williams, cCMV Mom

Indiana
Leslie Miller, cCMV Mom
Nichristin Guesman, cCMV Angel Mom

Idaho
Jessica Rachels, cCMV Mom, Co-founder, Idaho CMV Advocacy Project

Iowa
Amanda Devereaux, cCMV Mom
Joy Grouette, cCMV Angel mom

Kentucky
Denise Lewis-Lancaster cCMV Grandparent/Support  Personnel
Christie Cockerell, cCMV parent
Carol Jackson, cCMV Mom
Victoria Aquilar, CMV Mom
Gregory Fisher, cCMV Dad
Nelleke van Wouwe, cCMV Mom
Sarah and Keith Streeval, cCMV parents
Luci and Trint Webb, cCMV parents
Katie and Reece Wallace, cCMV parents
Leticia and Justin Branham, cCMV parents
Kimberli Wiltfang, cCMV Mom
Jewells Parker and Tyler Creek

Maine
Debbie, cCMV Grandmother

Minnesota
Allison Tureson and Michael Zawchenuk, cCMV parents

Missouri
Kimberly McDaniel

Ohio
Desirae Dunbar, cCMV mom

Oklahoma
Cara Gluck, cCMV Mom, Public Health Professional

Pennsylvania
Autumn Burrow, cCMV Mom

South Carolina
Laura Martin, cCMV Mom

Texas
Karen, cCMV Mom
Brittany Vick, cCMV Mom
Montana Bellah and Seth Williams , cCMV parents 
Victoria Garcia

Washington
Elisabeth A. Schafer, Ph.D.


OTHER COUNTRIES

Canada
Kerri and Zackary Despres, cCMV Parents

United Kingdom
Jessica, cCMV Mother 

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REFERENCES 

American Academy of Pediatrics, Red Book, 2015, p.144-145 (retrieved from https://redbook.solutions.aap.org/DocumentLibrary/Red%20Book%202015%201.pdf) .

American Academy of Pediatrics et al., Staff Education and Policies on Cytomegalovirus (CMV), "Caring for Our Children: National Health and Safety Performance Standards; Guidelines for Early Care and Education Programs" (retrieved from http://nrckids.org/CFOC/Database/7.7.1.1).

American Academy of Pediatrics, Pennsylvania Chapter, Model Child Care Health Policies, “Acceptance of Occupational Risk by Staff Members,” Aronson SS, ed. 5th ed. Elk Grove Village, IL: American Academy of Pediatrics; 2014. www.ecels-healthychildcarepa.org, p. 116 (retrieved from https://d3knp61p33sjvn.cloudfront.net/2015/01/AAP_Model_Child_Care_Health_Policies.pdf.pdf).

American College of Obstetricians and Gynecologists, "Reducing Risks of Birth Defects: What infections should I be concerned about and how can I reduce my risk of getting them during pregnancy" (retrieved from http://www.acog.org/.../faqs/reducing-risks-of-birth-defects).

Cannon, Michael J., and Davis, Katherine Finn, "Washing our hands of the congenital cytomegalovirus disease epidemic,"2005 (retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1182379/)

Centers for Disease Control and Prevention (CDC), "Cytomegalovirus (CMV) and Congenital CMV Infection" (retrieved from https://www.cdc.gov/cmv/index.html). CDC's Graphics and Web Buttons (https://www.cdc.gov/cmv/resources/graphics-buttons.html). 

Colleran, Vanessa, "The Role of Prenatal Counseling in Preventing Congenital CMV", 2020 (retrieved from https://cmvmass.org/2020/12/05/the-role-of-prenatal-counseling-in-preventing-congenital-cmv/).

Demmler-Harrison, MD, Gail J., “CMV In Pregnancy: What Should I Know?,” 2014, (retrieved from https://www.texaschildrens.org/blog/2014/12/cmv-pregnancy-what-should-i-know#:~:text=Is%20CMV%20infection%20common%20in,risk%20increases%20to%20approximately%2010%25.).

Doutre, Sara M., et al, Losing Ground: Awareness of Congenital Cytomegalovirus in the United States, 2016 (retrieved from https://digitalcommons.usu.edu/jehdi/vol1/iss2/6/)

National CMV Foundation (found at https://www.nationalcmv.org)

Occupational Safety and Health Administration (OSHA), ”Cytomegalovirus" (retrieved from www.osha.gov/SLTC/cmv/hazards.html).

Revello, Maria Grazia, et al., "Prevention of Primary Cytomegalovirus Infection in Pregnancy", 2015 (retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4588434/)

Saint Louis, Catherine, New York Times, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed", 2016 (retrieved from https://www.nytimes.com/2016/10/25/health/cmv-cytomegalovirus-pregnancy.html).

Stowell, Jennifer D. et al., "Cytomegalovirus Survival and Transferability and the Effectiveness of Common Hand-Washing Agents against Cytomegalovirus on Live Human Hands", 2014 (retrieved from https://aem.asm.org/content/80/2/455.full).

Thackeray, Rosemary, and Magnusson, Brianna, "Child Care Provider Awareness and Prevention of Cytomegalovirus and Other Infectious Diseases", 2016 (retrieved from https://link.springer.com/article/10.1007/s10566-015-9325-y).

Zucker, M.D., J.D., Howard A, Commissioner, NY Department of Health, 2018 (letter retrieved from https://www.health.ny.gov/commissioner/letters/docs/2018-08.pdf).



APPENDIX I

One mother who helped her state pass a CMV Education Law

Jessica Rachels and her daughter Natalie, born with congenital cytomegalovirus (CMV). Jessica, co-founder of the Idaho CMV Advocacy Project, is a former child care provider dedicated to educating women and families about the risks of CMV during pregnancy. She helped Idaho pass a CMV education law, which requires its Department of Health and Welfare to educate the public about CMV. 


APPENDIX II

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). Retrieved from https://www.worksafe.qld.gov.au/injury-prevention-safety/hazardous-exposures/biological-hazards/cytomegalovirus-cmv-in-early-childhood-education-and-care-services

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). Retrived from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4844919/


One Woman's CMV Rights Settled in an Australian Court 

In New South Wales, Australia, in a landmark decision, “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).

Meridian Lawyers of Australia discuss the "Educational and Care Services National Law," effective 2012, which requires that the operator of an approved provider of a childcare service be mindful "of the duty of care owed to staff members to take reasonable care to ensure a safe work environment for staff, but also to warn of the risks of their employment...a child care worker will still be at increased risk of exposure to a virus such as CMV than if they worked in a non-childcare setting...It is this increased risk of exposure to the virus, together with the potential for catastrophic consequences to a developing foetus if the mother is infected while pregnant, which gives rise to the duty to warn female workers of the risk of exposure to CMV while working in Childcare. And as the case of Hughes ...illustrates, the duty of care even extends to the unborn child of a worker...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...”

APPENDIX III



Free CMV Teaching 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


MUSIC/SLIDE SHOW

Congenital CMV Public Service Announcement (PSA): Music Video--"Had I Known (about CMV)" =, produced by Lisa Saunders. Song by Debra Lynn Alt, 2018: https://youtu.be/1WoGjfieRhY

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.

15 comments:

Debbie said...

Grandmother to cCMV little boy. Took 5 1/2 years to find out Mom probably had CMV in last trimester. Cerebral Palsy and Microcephaly Autism, Asthma, Acid reflex spastic right hemi quad and on and on. It is a travesty that Moms are nottested and informed and all newborns should be checked at birth. How unfair that some of these children could have been helped...with antiviral meds given may not have lost the hearing...such a travesty. Our country has this knowledge but does not gwt ot out even to Doctors medical staff. Shame on us!

Debbie said...

I am in Maine. I forgot to add location.

Kim said...

Kimberly Perth cCMV mom - New York

Desirae Estelle said...

Desirae Dunbar cmv mom

Desirae Estelle said...

Desirae Dunbar cmv mom Batavia, OH

Gregory said...

Gregory Fisher cmv dad flatwoods kentucky

Victoria said...

Victoria Aguilar CMV MOM KENTUCKY

Lisa Saunders said...

I have added above signatures. I will keep adding as they come in.

Britvick said...

Texas: Brittany Vick cCMV mom

Unknown said...

Denise Lewis Lancaster cCMV Gmom KY

Kimberly M said...

Kimberly McDaniel - Missouri

Kimberly M said...

Kimberly McDaniel - Missouri

Joy Grouette said...

Joy Grouette- Iowa Ccmv Angel mom

Unknown said...

Nichristin Guesman - Indiana CMV Angel Mom

Unknown said...

Heather McMahon - NY