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.

***

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.

Friday, March 5, 2021

Elizabeth Saunders died in New York during a Seizure at Age 16. Epilepsy Caused by Congenital CMV, #1 Birth Defects Virus

My daughter Elizabeth, born Dec. 18, 1989, died in Nyack, New York, February 9, 2006, at the age of 16 during a seizure. Her epilepsy was caused by congenital CMV, the leading viral cause of birth defects. We buried her in Airmont, NY, with the Valentine's cards that were already mailed to her before she died. 

Expecting Elizabeth, due to be born on Christmas Eve of 1989, had been an exciting experience. But the moment she arrived on the 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed. "The neonatologist said, "Your daughter has microcephaly--her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV). Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them.
 
Why hadn’t I heard of CMV before and the precautions to take? While I was pregnant with Elizabeth, I not only had a toddler of my own, but I also ran a licensed daycare center in my home. I felt sick at what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.

When my husband Jim heard Elizabeth's grim prognosis, he stared at her and said, “She needs me”—just like Charlie Brown with that pathetic Christmas tree. It took me about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish over Elizabeth's condition. Life did become good again—but it took a lot of help from family, friends, some Valium, and the Book of Psalms. We were eventually able to move forward as a happy, "normal" family.

Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. When the song “I’ll be home for Christmas” played on the radio, I cried thinking how hard Elizabeth fought to be home with us, overcoming several battles with pneumonia, spinal and hip surgeries, and most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and adult teeth, but she was lovely to us with her long, brown hair, large blue eyes and soul-capturing smile. Although still in diapers and unable to speak or hold up her head, Elizabeth was very happy and loved going for long car rides. She especially enjoyed going to school and being surrounded by people, paying no mind to the stares of “normal” children who thought she belonged on the "Island of Misfit Toys."

Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, “Now be a good girl today.” She smiled as she heard her teacher say what she said every time, “Elizabeth is always a good girl!” With that, I left.

At the end of the day, I got the call I had always feared. “Mrs. Saunders, Elizabeth had a seizure and she’s not breathing." The medical team did all they could, but she was gone. While holding Elizabeth’s body on his lap, my husband looked down into her partially open, lifeless eyes and cried, “No one is ever going to look at me again the way she did.”


Now when we prepare to celebrate Christmas without Elizabeth, it is with some heartache that I bring out the holiday decorations. Elizabeth used to love to sit on the couch with her big, once homeless old dog Riley, and watch us decorate. (Their story is told in my memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV.")

Now, I perform a new Christmas tradition. I carefully unfold the black and red checked shirt Elizabeth wore on her last day and hang it over an empty chair beside our fireplace. Although she can't be home for Christmas, I feel that she is my “Tiny Tim” who would say, if she could, “God bless us, everyone!”

Although I miss Elizabeth, I’m glad she is free from suffering, glad she is safe in her new, Heavenly home. I knew I would need reminders of where Elizabeth was and what she is enjoying, so engravers etched on the back of her headstone that she is dwelling in the house of the Lord where: "...the lame leap like a deer and the mute tongue shout for joy" (Isaiah 35:6). Many times when I was lost in despair those first few years, I visited her stone, hugged it, and left somewhat cheered when I pondered her new life.



When my time comes, I will see Elizabeth again.





My father wrote a fairy tale that I found very helpful after Elizabeth died, The Woodcutter’s Tale. You can read it for free on my blog with comments on grieving at: https://congenitalcmv.blogspot.com/2016/03/surviving-loss-woodcutters-tale.html

The Only Thing I Can Do for Elizabeth Now

Since Elizabeth no longer needs my care, the only thing I can do for her now is to care for those not yet born—to prevent them from suffering as Elizabeth did. I do that by speaking and writing about congenital CMV prevention. When I lived in Connecticut, I was thrilled when legislators finally passed a bill requiring congenital CMV testing for infants who fail their hearing screen. 

After presenting the story of Elizabeth's life at the first international Congenital CMV conference held in the U.S, at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, in 2008, scientists from all over the world approached to thank me for inspiring them to continue their work. Mothers, on the other hand, pushed their children towards me in wheelchairs and asked, “Why didn’t my doctors tell me how to prevent this?” One mother even asked, "Learning what you did, why didn't you do all you could to shout it from the rooftops?"

I moved back to New York (Baldwinsville, near Syracuse) in December 2019. Until doctors make CMV prevention a standard practice of care, I'm trying to "shout it from the rooftops" through my writing, speaking engagements, and contacting New York legislators I hope will help. Thankfully, there is a large army of CMV parents and medical professionals doing the same thing.

Thursday, March 4, 2021

Asking NY Legislators to Stop #1 Birth Defects Virus, Cytomegalovirus (CMV)

New York CMV Advocacy Project 

Revise Public Health Law, Senate Bill S2816

to improve prevention and early treatment of congenital cytomegalovirus


The 2018 Senate Bill S2816, www.nysenate.gov/legislation/bills/2017/s2816/amendment/original, was authored by Assemblymember Linda B. Rosenthal

In 2020, I learned that mothers and child care providers of young children in New York are still not being educated about their "occupational risk" for CMV despite OSHA's warning to caregivers, the NY Department of Health's webpage on CMV, and the availability of several free educational tools from the CDC and Cornell University

More New York babies can avoid the disabilities caused by congenital cytomegalovirus (cCMV), saving taxpayers the costs of special education, lost wages, etc., by making the following amendments to S2816:

1) Provide more specific wording to help the Health Department fulfill its mandate already in place to provide CMV prevention education, particularly for women at high risk, such as pregnant mothers who have a toddler in group care and child care providers/educators. The risk of cCMV is significantly higher than other, better-known congenital diseases such as fetal alcohol syndrome and HIV/AIDS. Prevention measures are simple and include basic hygiene practices that involve avoiding contact with saliva and urine from babies and young children. cCMV infections can only be prevented by preventing CMV infection in pregnant women.

2. Make cCMV a reportable condition in New York (https://health.ny.gov/forms/instructions/doh-389_instructions.pdf). This will enable health department personnel to track affected babies and notify their pediatricians within the 3 week window to confirm that the infection is congenital. This in turn will compel the pediatrician to refer the baby with cCMV to a Pediatric Infectious Diseases Specialist, who would pursue a workup and consider antiviral treatment to lessen the long-term consequences. Moreover, early identification of cCMV has been found to reduce the functional impairments that stem from hearing loss.


FACT SHEET


A. What is Congenital Cytomegalovirus (cCMV)?

  • CCMV is the most common congenital (present from birth) infection in the United States.

  • Cytomegalovirus (CMV) is a type of herpesvirus and can be acquired at any point, often resulting in mononucleosis-like symptoms, or even no symptoms at all. While it is a type of herpesvirus, CMV is not the same as the sexually-transmitted disease genital herpes.

  • cCMV is acquired in utero and can result in much more serious effects in the baby.

  • cCMV is the leading infectious cause of birth defects and developmental disabilities, including: hearing loss, mental disabilities, physical disabilities, vision loss, seizures, cerebral palsy, and in the most serious cases, can result in death.(www.ncbi.nlm.nih.gov/pmc/articles/PMC3046747/).

  • CMV by the Numbers: 


  • # In the U.S., about 1 in every 200 babies is born with a cCMV infection. Of these babies, around 1 in 5 will have long-term health problems.(www.cdc.gov/cmv/index.html). 
    # In 2019, 3,747,540 babies were born in the U.S (https://www.cdc.gov/nchs/fastats/state-and-territorial-data.htm). Therefore, an estimated 18,738 babies were born with congenital CMV and 3,748 babies had some disability caused by cCMV in the U.S.
    # In New York, in 2019, 221,539 babies were born. Therefore, an estimated 1,108 babies were born with congenital CMV, with 222 babies being born permanently disabled by congenital CMV.
  • New York Times article, CMV Is a Greater Threat to Infants Than Zika, but Far Less Often  Discussed features Gail J. Demmler-Harrison, MD. She states on her medical blog: “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?,” 2014).

  • Racial and ethnic minorities are particularly at risk for CMV: "CMV is more common among socially disadvantaged groups, and it clusters geographically in poor communities,"  states article, Geographic Disparities in Cytomegalovirus Infection During Pregnancy (Lantos et al, 2017).  "We found a high prevalence of CMV seropositivity in urban low-income neighborhoods among pregnant women, particularly among racial and ethnic minorities. Seronegative pregnant women from these communities might be at heightened risk for primary CMV infection." Another study concluded, "Significant racial and ethnic differences exist in the prevalence of cCMV, even after adjusting for socioeconomic status and maternal age" (Fowler et al.,Racial and Ethnic Differences in the Prevalence of Congenital Cytomegalovirus Infection, 2018).

B. cCMV is largely preventable, but 91% of women do not know about the disease or prevention.

  • There is a lack of Education and Awareness of cCMV and its Prevention Measures

  • Only 9% of women are aware of CMV and its implications; the awareness in men is even lower (5%) (https://digitalcommons.usu.edu/jehdi/vol1/iss2/6/).

  • cCMV is highly preventable with education and easy prevention measures (such as frequent hand-washing, avoiding sharing food, and avoiding contact with a child’s saliva) during pregnancy.

  • 1.2% of expecting mothers who were given hygiene information on CMV and cCMV prevention and prospectively tested until delivery acquired a CMV infection, compared to 7.6% in a comparison group who did not receive prevention education or testing (https://pubmed.ncbi.nlm.nih.gov/26501119/).

  • PROBLEM IN NEW YORK FOR CAREGIVERS/TEACHERS: When the New York State Office of Children and Family Services (the group that licenses child care providers) was contacted in 2020, it was learned that child care providers are still not receiving CMV information in their already mandated infectious disease training despite their occupational risk for CMV and the free CMV training resources available. Free resources include OSHA's warning to caregivers, the NY Department of Health's webpage on CMV, and educational tools from the CDC and Cornell University. The Professional Development Program in Albany, the organization that creates the training for child care licensing (Phone: 518 442-6575), could not be reached for comment.

  • SOLUTION: Child Care Providers already receive infection control training to receive their licenses, so inserting CMV information into training shouldn't cost the state anything. In 2018, HOWARD A. ZUCKER, M.D., J.D , Commissioner of Health, stated: "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://health.ny.gov/commissioner/letters/docs/2018-08.pdf). 

  • Although New York's Senate Bill S2816 requires public education, the Department of Health's website CMV page is rudimentary and was last reviewed in October 2011. It lists a few facts about the virus in general but does not address cCMV directly, moreover its statistics about CMV are incorrect and outdated. (www.health.ny.gov/diseases/communicable/cytomegalovirus/fact_sheet.htm).

  • Women of childbearing age have the right to be informed with information that can protect them during their pregnancies, yet are still uninformed. This has significant impact on women at high risk for CMV such as mothers with a toddler in group care and caregivers/teachers.


Medical Costof cCMV


The median cost of healthcare for a child with a symptomatic case of cCMV is 25.2 times higher than that of a child without cCMV over the course of the first four years.

In the general population, the median out-of-pocket expenditures throughout the first four years of a child’s life is $1,508. Among children with symptomatic cCMV, that cost is almost four times as high, at $6,766 per child. Among children with neurological complications resulting from cCMV, the median out-of-pocket cost increased to $8,511.


APPENDIX I

FUTURE EFFORTS

Universal Screening of Infants for cCMV Allows for Early Detection & Interventions

cCMV screening and should be pursued as the next step in cCMV legislation. If cCMV is detected at birth, some babies can be treated with antiviral drugs and hearing loss, as well as other side effects, can be mitigated.

Failure to detect cCMV is common and has devastating consequences: cCMV goes largely undetected because a majority of affected babies are asymptomatic at birth. However, being symptom-free at birth does not necessarily exempt asymptomatic cCMV-positive infants from the disease's impacts later in life. Currently in New York, there is a statewide policy that infants are to be screened for cCMV if they fail their hearing screening. However, this targeted screening is insufficient. 10-25 % of babies born  with cCMV will have no symptoms at birth but will later develop hearing loss by age 18. Because hearing loss due to cCMV often worsens or develops later in childhood, a policy of targeted screening of infants who fail the newborn hearing screening fails to detect nearly half CMV cases. (www.ncbi.nlm.nih.gov/pmc/articles/PMC5260148/), (https://pediatrics.aappublications.org/content/early/2017/02/14/peds.2016-2610)


APPENDIX II


Ten Reasons Why Caregivers/Teachers Must be Educated 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.” 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).


2) 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


3) HOWARD A. ZUCKER, M.D., J.D ,Commissioner of Health for New York, stated: "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).


4) American Academy of Pediatrics states: “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.).


5) 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). 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 ("Cytomegalovirus Infection in Pregnancy: Should All Women Be Screened?", Carlson et al., 2010).


6) Free CMV educational tools available: CDC has flyers in English and Spanish.Cornell University and the University of Connecticut provide training videos. (A great Link to CMV resources: https://cmvmass.org/workplace-prevention-for-employers/)


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). 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).


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). 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…"


APPENDIX III

Current cCMV legislation in the United States

  • 12 states have passed versions of cCMV legislation as of 2020: New York, Utah, Illinois, Iowa, Colorado, Hawaii, Idaho, Oregon, Texas, Tennessee, Connecticut, Virginia

  • Utah mandates that the Utah DPH implement a public health education campaign to inform women who are pregnant or might become pregnant about cCMV, the risks associated with CMV, and the recommended prevention measures; also mandates an education campaign for medical and child-care professionals. See Utah's H.B. 81 Cytomegalovirus Public Health Initiative that "requires the Department of Health to provide this information to...licensed child care programs and their employees (https://le.utah.gov/~2013/bills/static/hb0081.html).

  • New York, Illinois, Iowa,  and Utah require both education of pregnant women and targeted newborn screening.

  • Colorado, Hawaii, Idaho, Illinois, Iowa, New York, Oregon, Texas, and Utah require their state to educate the public and professionals about cCMV.

  • Tennessee requires health care providers to educate women of childbearing age

  • Connecticut, Iowa, Illinois, New York, Utah, and Virginia requires each newborn that fails its newborn hearing screening to be tested for cCMV


APPENDIX IV

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

The above 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.


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For more information:


Sunil K. Sood, MD

Chair of Pediatrics, South Shore University Hospital

Attending Physician, Infectious Diseases, Cohen Children's Medical Center

Professor, Zucker School of Medicine at Hofstra/Northwell


Nancy Stellato MSN RN

Clinical Research Nurse

Division of Infectious Diseases

Cohen Children’s Medical Center


Lisa Saunders, CMV Mom and Advocate

New York CMV Project 

Baldwinsville, NY

LisaSaunders42@gmail.com