Monday, October 31, 2016

Former Childcare Provider Lists 15 Things You Should Know/Do About CMV--Much More Widespread Than Zika

(Photo caption): Lisa Saunders was a licensed day care provider in 1989 when she gave birth to daughter Elizabeth born with microcephaly, a serious birth defect that resulted from Saunders contracting cytomegalovirus (CMV) while pregnant.

Lisa Saunders, Parent Representative
Congenital Cytomegalovirus Foundation

Former Licensed Day Care Provider and Mother of Child Born with Microcephaly Warns Childcare Workers of Increased Risk of CMV--Much More Widespread Than Zika

Mystic, Conn.—Licensed day care provider Lisa Saunders was not informed that caring for young children put her pregnancy at risk. In fact, most day care workers are largely unaware of cytomegalovirus (CMV), the leading viral cause of birth defects—much more widespread than Zika. 

In 2015, Saunders, parent representative of the Congenital Cytomegalovirus Foundation, was instrumental in the passage of the Connecticut CMV bill mentioned in the New York Times article, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed" (Oct. 25, 2016).  Saunders's book, Anything But a Dog! The perfect pet for a girl with CMV (cytomegalovirus), is seen behind Dr. Gail Demmler-Harrison in the live interview embedded in the New York Times article). 

In 1987, Saunders became a licensed in-home day care provider in Maryland. She said, “Nowhere in the licensing literature was there a mention of CMV and the extra precautions I should take. In 1989, my second daughter, Elizabeth, was born with microcephaly, a small, severely damaged brain, caused by congenital CMV. It was then that I received information from the hospital stating day care providers were at increased risk for contracting the disease because toddlers are often shedding it through their bodily fluids.” Elizabeth died 16 years later during a seizure in 2006.

15 Reasons Why Caregivers/Teachers Should Know About CMV

1. Congenital CMV is the #1 Birth Defects Virus (Carlson et al., 2010). "More children will have disabilities due to congenital CMV than other well-known infections and syndromes, including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/AIDS" (
2. 1% of live born infants are infected prenatally with CMV (American Academy of Pediatrics [AAP] et al., Caring for Our Children, 2011). 
3.“Women who are exposed to CMV prior to conception or within the first trimester of pregnancy and seroconvert have increased risk of their infant being infected with CMV.”(Thackeray et al., 2016).
4. CMV is an “occupational risk" for daycare educators (Joseph, et al., 2006). Caregivers/teachers should be told about CMV because of increased probability of exposure (AAP et al.. 2011). 
5.General public: 1-4% is the estimated “annual rate of a pregnant woman who is CMV antibody negative catching CMV for the first time in pregnancy” Demmler-Harrison, MD, CMV In Pregnancy: What Should I Know?, 2014).
6.Caregivers/teachers: 8- 20% of them contract CMV infection every year (AAP et al.. 2011).
7.44% to 100% of two-year-olds in group daycare are excreting CMV (Pass et al., 1986).
8.Only 18.5% of licensed “in-home” daycare providers have heard of CMV according to “Child Care Provider Awareness and Prevention of Cytomegalovirus and Other Infectious Diseases” (Thackeray et al., 2016).
9. NAEYC: National Association for the Education of Young Children and its "Early Childhood Program Standards and Accreditation Criteria & Guidance for Assessment (10.D.01, p.91)" includes: "a. steps to reduce occupational hazards such as infectious diseases (e.g., exposure of pregnant staff to CMV [cytomegalovirus], chicken pox)..."
10.It is a worker's right to know occupational hazards according to the Occupational Safety and Health Administration (OSHA). There are more than half a million child care workers (573,430) in the U.S. according to the Child Care in America: 2016 State Fact Sheet report (pdf) published by Child Care Aware of America
11.“Providers do not know how to appropriately sanitize surfaces to reduce spread of disease.” Many providers use diaper wipes to clean a surface. Diaper wipes do not sanitize (Thackeray et al., 2016).
12.“Increasing risk perception is important because providers may not be concerned about taking measures to reduce the probability of infection if they feel that they are at low risk” (Thackeray et al., 2016).
13.Mothers of children in daycare are also at increased risk for CMV (Pass et al., 1986). “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 et al., 2016).
14.$1.86 billion annually, with a cost per child of more than $300,000, is the estimated cost of congenital CMV to the US health  care system (Modlin, Arvin, et al., 2004).
15.The CDC "suggests that pregnant women reduce their risk of CMV acquisition during pregnancy using simple hygienic precautions but this suggestion is not often followed...the efficacy of hygienic precautions has been [greater than] 75%.” (Adler, 2015).  “Perhaps no single cause of birth defects and developmental disabilities in the United States currently provides greater opportunity for improved outcomes in more children than congenital CMV…women deserve to be informed about how they can reduce their risk of CMV infection during pregnancy…” (Cannon et al., 2005).

Shortly after moving to Connecticut in 2010, Saunders received a call from a local grandmother who said her grandson was just born disabled by congenital CMV. Saunders said, “The baby's mother had been a college student interning at a Connecticut day care center while pregnant. She, too, had not been educated about CMV and how to protect her pregnancy. When I visited the mother and baby in the hospital, the attending nurse asked me why more wasn’t being done to raise awareness of this leading viral cause of birth defects." 

Saunders understands that CMV is not a pleasant topic, "but child care providers like myself are upset when they don't learn about their increased risk for CMV and need to practice meticulous hand-hygiene until after their babies are born disabled by congenital CMV."

 “Pregnant childcare employees should be informed about CMV, assess their risk by serologic testing or avoid if possible caring for children less than 2 years age for the duration of pregnancy," states Stuart P. Adler M.D. of the CMV Research Foundation Inc. in his article, "Prevention of Maternal–Fetal Transmission of Cytomegalovirus." provides helpful CMV prevention tips and advice for daycare workers at: and here is another article geared to daycare providers:

Saunders also wrote "Have a Toddler or Care for One?" which people can share plus her outline and talking points for a presentation on CMV.
    The following is a funny video staring, "Rhonda Rhinovirus," a germ who loves to tell stories about how they like to travel. It includes information on CMV (in the herpesvirus family, like chicken pox). It was produced by the worldwide LDS church as a result of Utah's request to educate on on CMV prevention. It's very entertaining! Watch:


    1."Staff Education and Policies on Cytomegalovirus (CMV)," American Academy of Pediatrics (AAP) et al., Caring for Our Children

    2."Situations that Require Hand Hygiene" (AAP et al., Caring for Our Children)

    3. National CMV Foundation Awareness Flyer with the Connecticut Department of Public Health (DPH) logo found under the "Information for Healthcare Providers” section at:

    4. Fact sheet from on CMV  includes child care providers.

    5.Connecticut Department of Public Health posts on its website: CDC Recommendations for People Who Care for Infants and Children

    6.National CMV Foundation features several types of CMV flyers for downloading.

    7.Congenital CMV Disease Research Clinic and Registry provides resources for women of childbearing age.

    8. CMV prevention brochure specifically for child care providers: Utah's brochure for childcare providers).

    9.For students and families: Free CMV Teaching Tool Kit: "Once Upon a Placemat: A Table Setting Tale" by Lisa Saunders—Educational coloring book and fairytale emphasizes hand-washing and refraining from sharing cups/utensils.

    10, Henry The Hand teaching supplies/programs for schools. Created newsletter campaign on CMV.


    About Lisa Saunders:

    Lisa Saunders is the parent representative of the Congenital Cytomegalovirus Foundation, which raises awareness about maternal testing for first infection during pregnancy, newborn testing, and the need to develop a vaccine. Saunders and her work to get Connecticut to pass a CMV bill was featured in Cornell’s Alumni Magazine (Sept/Oct 2015) and was widely covered in the media (News 8 at CT Capitol RE: CMV). She is the author of the memoir, Anything But a Dog! The perfect pet for a girl with CMV (cytomegalovirus), which is also being released in Japan in December 2016. A short story about her daughter Elizabeth's life with congenital CMV is told through images and music on this three-minute video. To educate entire families in a fun and memorable way, Saunders recently published the short booklet,  “Once Upon a Placemat: A Table Setting Tale,” which includes CMV prevention tips such as refraining from sharing dishes plus a free teaching tool kit with downloadable placemats for coloring and a video. Visit Lisa at


    For more information from doctors/medical professionals, scientists, contact: 

    Brenda K. Balch, MD, Connecticut's American Academy of Pediatrics Early Hearing Detection and Intervention Chapter Champion, who was instrumental in the passage of the Connecticut CMV bill. She has a strong interest in congenital CMV because it is a major cause of hearing loss (she sent Testimony to CT’s HB 5525). Contact:
    Gail J Demmler-Harrison, MD, Professor, Pediatrics, Section Infectious Diseases, Baylor College of Medicine, Attending Physician, Infectious Diseases Service, Texas Children's Hospital, CMV Registry, CMV Research and CMV Clinic. The CMV Registry supports CMV research, disseminates information and provides parent support. Visit: 832-824-4330,
    Dr. Stuart Adler and Registry Personnel
    514 Diane Lane, Richmond, VA 23227

    Stuart Adler, M.D., Professor Emeritus of Pediatrics and Professor of Microbiology and Immunology, Virginia Commonwealth University. (sent Letter of Testimony to CT’s HB 5147).
    Phone: (804) 264-8296, Email: 

    Lenore Pereira, Ph.D., Congenital CMV Foundation founder and Professor, Cell and Tissue Biology Department, University of California San Francisco, at, or visit The Congenital CMV Foundation raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine. 

    Eugene D. Shapiro, M.D., Professor of Pediatrics, Epidemiology and Investigative Medicine, Yale University, (sent Letter of Testimony to CT’s HB 5147).


    Lisa Saunders, Congenital CMV Foundation parent representative (mother of Elizabeth severely disabled by congenital CMV, 1989-2006), PO Box 389, Mystic, CT 06355, (sent Letter of Testimony to CT’s HB 5147).

    Casey Famigletti of New Canaan, Connecticut, mother of child born disabled by congenital CMV (sent Letter of Testimony to CT’s HB 5147).


    Stephanie Browning McVicar, Au.D., CCC-A, DOCTOR OF AUDIOLOGY (she worked tirelessly to pass the Utah bill), Specialty Services Program Manager, State EHDI Director, State of Utah Department of Health, Children with Special Healthcare Needs, Children's Hearing and Speech Services, (801) 584-8218, (click on Utah's Children's Hearing and Speech Services to download English/Spanish pamphlets for daycare providers, doctors and parents).

    Although the U.S. Senate passed legislation in 2014 recommending that “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children” because "The incidence of children born with congenital cytomegalovirus can be greatly reduced with public education and awareness," and designated the month of June as "National Congenital CMV Awareness Month," in 2015, the American College of Obstetricians and Gynecologists (ACOG) has reversed it's decision to instruct their pregnant patients on what it takes to prevent CMV transmission (you can read about that in the NY Times article).  ACOG's new position on CMV instruction, recently revised in 2015, is that patients will think such guidelines difficult to implement because  "they often are considered impractical or burdensome." (see page 1514 of the ACOG Practice Bulletin (June 2015), [151 Cytomegalovirus, Parvovirus B19, Varicella Zoster, and Toxoplasmosis in Pregnancy (June 2015]) 

    When I contacted the CDC in July 2016 to ask why they took down CMV prevention tips such as pregnant mothers refraining from kissing their toddlers around the mouth or sharing utensils with them, I received a response in August 2016 stating, "The prevention recommendations currently on the CDC website are consistent with 2015 guidelines from the American College of Obstetricians and Gynecologists (ACOG) and the American Academy of Pediatrics." 

    Perhaps these following daycare organizations will post CMV prevention information:

    Wednesday, October 12, 2016

    Japan Publishes CT Mom's Book on Congenital CMV (cytomegalovirus), "Anything But a Dog! The perfect pet for a girl with congenital CMV"

    Japan Publishes Book by Connecticut Author About Child With Congenital Cytomegalovirus (CMV)--New York Times States: "CMV Is a Greater Threat to Infants Than Zika"

     Amazon Japan

    Publisher's site in all Japanese

    2016 (book released in 2017): Mystic, Conn.--Sayaka Nakai, an English - Japanese book translator with Thousand Books Project Team of Tokyo, worked with author Lisa Saunders  of Mystic, Connecticut, to translate her memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus),” into a Japanese print edition to raise awareness of the leading worldwide viral cause of birth defects. The Japanese title is "Elizabeth and the Miracle Dog Riley" and is published by Thousands of Books of Tokyo (

    “Anything But a Dog!” (published 2008, Unlimited Publishing LLC) is about Saunders's disabled daughter, Elizabeth (1989 – 2006), who grew up beside an older, tomboy sister and a series of dysfunctional pets that finally included a formerly homeless dog that kept Elizabeth company on her couch. In 2015, Saunders was instrumental in getting Connecticut to pass a law to combat the disease. 

    Tomomi Watanabe, a founder of TORCH Association Japan,, (TORCH: Toxoplasmosis, Other infections, Rubella, Cytomegalovirus, and Herpes simplex virus, which can cause serious conditions in the fetus or newborn following asymptomatic or mild maternal infection), was given the book by Dr. Naoki Inoue after he met Saunders at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, in 2008 during an international congenital CMV conference.

    Watanabe said, "I wanted to get 'Anything but a dog'  published in Japan so more Japanese people would know about children with congenital infections and their families. Although we live far away across the Pacific, I believe we Japanese mothers feel the same way as American mothers do. We are like-minded in our mission, love our children, and regret that our lack of knowledge about CMV led to the disabilities of our children. Now, we wish to save unborn lives and help children with congenital infections and their families because helping others is one way to overcome our sad experiences.  I believe Lisa’s book will make people agree that we have to do something for future children to protect them from congenital CMV." 
    Japanese writer Akiko Hosokawa interviewed Lisa Saunders to publicize the need for raising cytomegalovirus awareness and funds to translate and publish “Anything But a Dog!” She asked Saunders questions such as, “Do you know how you caught CMV while pregnant?”; “Did you know about CMV during your pregnancy?”; “Is CMV well-known in the U.S.?”; and “What would you like to say to Japanese people about CMV?” In addition to The Tokyo Shinbun, other Japanese newspapers covering the book project included Hokkaido Shinbun and Kyodo News.
    Translator Sayaka Nakai said popular and well-known OB-GYNs, pediatricians, and experts in infectious diseases helped raised funds to publish the book, expected to be released January 2017. Nakai said, “Doctors have promised us they will put the book in their waiting rooms. Mothers have promised us that they will donate extra copies to school libraries.”

    Lisa Saunders is the parent representative of the Congenital Cytomegalovirus Foundation (in 2018 she became Leader of Childcare Providers Education & Outreach, National CMV Foundation) and continues to try to educate women of childbearing age to refrain from sharing food, cups and utensils with toddlers who are often shedding cytomegalovirus. Other precautions include refraining from kissing toddlers around the mouth and careful hand-washing after changing diapers. Saunders ran a licensed day care when she was pregnant with Elizabeth and nowhere in the licensing literature was there a mention of her greater risk of contracting CMV.  Her work to get the Connecticut CMV bill passed was covered widely in the media such as Fox CT and Cornell University’s Alumni Magazine (Sept/Oct 2015). A short story about her daughter Elizabeth's life with congenital CMV is told through images and music in this three-minute videoVisit Lisa at
    For more information about the book project, visit:

    Photograph caption: At the September 2016 Congenital Cytomegalovirus Public Health and Policy Conference in Austin, Texas, Lisa Saunders met Hiroyuki Moriuchi, MD, PhD, Professor and Head, Department of Pediatrics, Nagasaki University Graduate School of Biomedical Sciences, Nagasaki University Hospital, JAPAN.  Dr. Moriuchi, advisor to TORCH-Japan, shared a presentation created with Tomomi Watanabe, a founder of TORCH Association Japan: Of the Families, by the Families, for the Families Wishing to Reduce or even Eliminate Congenital CMV Infection: Activities by a Patients and Families Association in Japan [PDF]. The slides included their work to translate and publish Saunders's book, “Anything But a Dog! The perfect pet for a girl with congenital CMV (Cytomegalovirus).”  At the conference, Dr. Brenda Balch and Lisa Saunders presented: "As One Door Closed, Another Door Opened: The Congenital CMV Initiative in Connecticut"  (Photograph is a "selfie" taken by Lisa Saunders.)


    Lisa, parent representative of the Congenital Cytomegalovirus FoundationLeader of Childcare Providers Education & Outreach, National CMV Foundationand author of “Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus)”. Visit Lisa at

    Tomomi Watanabe,, a founder and representative of TORCH Association Japan,, (TORCH: Toxoplasmosis, Other infections, Rubella, Cytomegalovirus, and Herpes simplex virus, which can cause serious conditions in the fetus or newborn following asymptomatic or mild maternal infection). Facebook page:  (or @toxocmv) 

    Sayaka Nakai,, of Tokyo, English -Japanese book translator, Thousand Books Project Team. Book can be found on publisher's site at:

    Atsushi Hori,, The English Agency (Japan) Ltd., 3F. Sakuragi Bldg., 6-7-3 Minami Aoyama, Minato-ku Tokyo 107-0062, JAPAN

    Akiko, THE TOKYO SHIMBUN writer, 2-1-4 Uchisaiwaicho , chiyoda-ku, TOKYO, 100-8505 Japan, PHONE 03(6910)2320

    Hiroyuki Moriuchi, MD, PhD,, Professor and Head, Department of Pediatrics, Nagasaki University Graduate School of Biomedical Sciences, Nagasaki University Hospital, 1-7-1 Sakamoto, Nagasaki 852-8501, JAPAN. He is also advisor of TORCH-Japan.

    Unlimited Publishing LLC, (U.S. Publisher of “Anything But a Dog!”), or visit:

    Note: The new Connecticut CMV testing law,  effective January 2016, is mentioned in the New  York Times article, CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed. Saunders' book, “Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus),”  is shown in the background of the live video interview with Dr. Gail Demmler-Harrison in the article.