Wednesday, May 31, 2017

Former Daycare Provider Warns Others About CMV

Lisa Saunders, a former licensed daycare provider, holds her four-year-old daughter, Elizabeth, born disabled by congenital CMV in 1989.

 “CMV: Protect Your Pregnancy”

by Lisa Saunders, a former licensed daycare provider
Category: "Women's Issues: Health"

Most pregnant women know to avoid changing the kitty litter to avoid toxoplasmosis, an infection that causes birth defects. They have also heard how to protect their pregnancies from Zika, the mosquito virus that can cause microcephaly. Very few women, however, know how to prevent a far greater menace—cytomegalovirus (CMV), the leading viral cause of birth defects, more common a cause of disabilities than Down syndrome and fetal alcohol syndrome. 

What is CMV? 
According to the 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 by age 40 have been infected with CMV...Most people infected with CMV show no signs or symptoms. However, CMV infection can cause serious health problems for people with weakened immune systems, as well as babies infected with the virus before they are born (congenital CMV)."

CMV in Child Care Centers

CMV is often found in child care centers. I was unaware that cytomegalovirus (CMV) was an occupational risk for daycare educators when I became a licensed home daycare provider in Maryland in 1987. I didn’t know that CMV could devastate my pregnancy with Elizabeth, who was born severely disabled by congenital CMV in 1989. Today, most U.S. daycare providers are still not aware of their increased risk for contracting CMV. According to the New York TimesCMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed (2016).

At the time of Elizabeth’s birth, I was operating my licensed home daycare center and volunteering in our church nursery, additionally putting my pregnancy at risk. Elizabeth was born with an abnormally small head, known as microcephaly, was profoundly mentally impaired, legally blind, and had cerebral palsy. After her birth, I was given information from the Centers and Disease Control Prevention (CDC) informing me that "People who care for or work closely with young children may be at greater risk of CMV infection than other people because CMV infection is common among young children..."

This information came too late to spare my daughter the years of suffering that lay ahead of her. Nowhere in my daycare licensing literature or training was CMV mentioned. CMV prevention measures were not discussed in my prenatal doctor visits.

Though Elizabeth grew into a very cheerful girl who won the "Best Smiling Award" at school, she couldn't hold up her head and lived as a three-month-old for 16 years, requiring several surgeries such as spinal fusion. She developed epilepsy and was gradually losing her hearing by the time she died at 16 during a seizure in 2006 while we were living in New York. I had a bad dream shortly after Elizabeth’s death about new parents wondering why I hadn’t done more to warn them about the precautions to take against CMV. Although I wrote about Elizabeth’s adventurous life with her tomboy sister and a series of dysfunctional pets, including a homeless older dog that joined her on the couch in my memoir, “Anything But a Dog: the perfect pet for a girl with congenital CMV,” congenital CMV still remains largely unknown.

In 2010, my husband and I moved to Connecticut. In 2012, I received an email from a distressed grandmother about her grandson born with congenital CMV in a Connecticut hospital (I am the parent representative of the Congenital Cytomegalovirus Foundation). The mother of her grandson was a high school student interning in a Connecticut daycare center. The young mother, just like me over 20 years earlier, was unaware she was putting her pregnancy at greater risk by working in daycare with young children.  When I visited the family in the hospital, the attending nurse asked me, "Knowing what you do about CMV, why haven’t you launched an awareness campaign?"

I explained to the nurse that CMV parents, scientists and doctors have been trying for years to raise awareness, but the real risk of CMV to pregnancies remains little discussed—a real tragedy for daycare workers given that every year, 8 - 20% of caregivers/teachers contract cytomegalovirus (CMV). The American Academy of Pediatrics recommends counseling caregivers of their increased exposure to CMV, importance of hand-washing, and avoiding contact with urine, saliva, and nasal secretions. Mothers of children in daycare are also at increased risk for CMV (Pass et al., 1986).

According to the study published in 2016, “Child Care Provider Awareness and Prevention of Cytomegalovirus and Other Infectious Diseases” by Rosemary Thackeray and Brianna M. Magnusson, “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.” Despite a daycare worker’s high risk of contracting CMV, only 18.5% of licensed “in-home” daycare providers have heard of it. The authors also state: “Providers do not know how to appropriately sanitize surfaces to reduce spread of disease.” For example, many providers use diaper wipes to clean a surface, but diaper wipes alone do not sanitize it. “Awareness of CMV and how to prevent transmission of infectious disease is low. Intervening with child care providers and parents through child care facilities are key opportunities to reduce prevalence of CMV infection and other diseases.”

In 2015, I collaborated with medical professionals and CMV families and concerned citizens to help Connecticut become the second state in the U.S. to pass a CMV testing law, which was featured in the media including Cornell Alumni and Connecticut magazines in addition to the New York Times. Fellow members of the Daughters of the American Revolution continue to help her promote awareness.

About the new CMV law in Connecticut, Dr. Brenda K. Balch, CT's American Academy of Pediatrics Early Hearing Detection and Intervention Chapter Champion, stated: "As of January 1, 2016, infants who do not pass their newborn hearing screen are tested for CMV...Therefore, CMV  educational materials  have been developed and distributed by Connecticut’s Department of Public Health to parents, hospitals, pediatricians and obstetricians...Parents have the right to know about CMV and CMV prevention." 

As a result of contacting organizations concerned with healthy birth outcomes, the following has resulted: 
My current goal is to make CMV prevention required training in child care centers in accordance with recommendations made by the American Academy of Pediatrics (AAP) in their co-authored book, Caring For Our Children, which includes “Standard Education and Policies on Cytomegalovirus (CMV).
To that end, I provide presentations and educational materials for the whole family to stop the spread of CMV. I have lectured for several organizations such as the Centers for Disease Control and Prevention, Society of Maternal Fetal Medicine, Maternal and Child Health Coalition, Infection Control Nurses of Connecticut, and Siemens Healthcare Diagnostics. Presentation titles have included: 
  • What Caregivers and Pregnant Women Need to Know About CMV
  • Congenital CMV and Research 
  • Connecticut and Congenital CMV
  • How a Parent Can Raise a CMV Prevention Message (including how to get a law passed)
I also interview health and wellness experts on the Lisa Saunders TV Talk Show (SEC-TV, channel 12), which is uploaded to YouTube. I write extensively about CMV for my Congenital CMV blog, press releases, newsletters, and articles and manage the Facebook pages CMV in Child Care and Congenital CMV News). I coordinate CMV educational campaigns through workshops, televised public service announcements, and health fairs, and through behavior change programs such as “Keep Your Cups to Yourself” and hand-washing. 

My other CMV work includes: 
  • Promoting CMV prevention programs to target populations such as child care workers and women of childbearing age by utilizing existing resources created by the National CMV Foundation, Congenital CMV Disease Research, Clinic and Registry, Congenital Cytomegalovirus Foundation, Centers for Disease Control and Prevention (CDC), and National CMV Registry for Pregnant Women (part of the CMV Research Foundation Inc.), in addition to other birth defects prevention organizations.
  • Consulting regularly with the country's leading CMV medical experts.
  • Contacting relevant organizations requesting CMV education be included in training materials, literature and websites. Currently in touch with agencies such as Occupational Safety and Health Administration (OSHA), Child Care Aware of America, March of Dimes, and a daycare union. 
  • Consulting with legislators to create CMV prevention education laws--particularly in regard to daycare centers. 
  • Reporting on CMV awareness and prevention among daycare workers and employers. 
  • Maintaining an extensive bibliography with live links to resource articles and presentations.
  • Researching health promotion and disease prevention campaigns through national observances: January: National Birth Defects Prevention Month; February: International Prenatal Infection Prevention Month; June: National Congenital CMV Awareness Month. In 2011, the U.S. Senate passed legislation recommending that “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children”; October: 15 - 21 International Infection Prevention WeekOctober 15Global Handwashing Day

  1. Coloring book: Once Upon a Placemat: A Table Setting Tale - CMV prevention tips from “Miss Cup” (2016
  1. Fun, Free Teaching Toolkit for Students and Their Families: "Grandma" uses Miss Cup to enforce germ prevention and uses Mr. Knife's fear that the dish will run away with the spoon to teach table-setting in the educational coloring book, "Once Upon a Placemat: A Table Setting Tale." Tool kit includes: Placemats--Side one: Placemat with tableware characters with space for your coloring artist's name (perfect for laminating and using as a table-setting reminder) plus there is space available for an organization's information if so desired before copying. Side two: Germ prevention tips and hand-washing instructions. Video geared to children introduces the placemat characters and how to download free placemats
  2. Music/image video about my daughter’s life: Girl with congenital cytomegalovirus (CMV)
  3. Memoir: Anything But a Dog! The perfect pet for a girl with CMV (Unlimited Publishing, 2008, Thousand Books, Japan, 2017)
  4. Booklet: Surviving Loss: The Woodcutter’s Tale: Fairytale about losing a child plus moving forward (2013)
  5. Mystic Seafarer's Trail: Misadventures trying to get thin and famous so people will hear about CMV (2012)



Past CMV presentations include: 

Society of Maternal Fetal Medicine, Las Vegas, NV (January 26, 2017)
"Congenital CMV and Research" – Caesars Palace. Contact: Sabine Bousleiman M.S.N,M.S.PH, Program Director, Columbia University, OBGYN Department, (212) 305-4348(917)

Maternal and Child Health (MCH) Coalition, Hamden, CT (December 13, 2016)
Women's Consortium: Contact Marijane Carey,

Congenital CMV Public Health & Policy Conference, Austin, TX (September 27, 2016)
As One Door Closed, Another Door Opened: CT Congenital CMV Initiative”, co-presented with  Brenda Kinsella Balch, MD, CT pediatrician and Chapter Champion for the American Academy of Pediatrics Early Hearing Detection and Intervention Program, bkbalch@sbcglobal.net  

Connecticut and Congenital Richard Eighme, Medical Assistance Program Oversight Council, (860), or Rep. Susan Johnson,

Connecticut Public Health Committee, Capitol Legislative Office Building, Hartford, CT (February 20, 2015)

CMV Public Health and Policy Conference, Salt Lake City, UT (September 26, 2014)
How a Parent Can Raise a CMV Prevention Message” Contact: Gail J Demmler-Harrison, MD, Professor, Pediatrics, Section Infectious Diseases, Baylor College of Medicine, Attending Physician, Infectious Diseases Service, Texas Children's Hospital, Congenital CMV Disease Research, Clinic &

Westerly Registered Nurse’s Club, Westerly, RI (April 22, 2014)
“Supporting a Connecticut CMV Bill,” Mermaid Café. Contact: Ida Manzella,

Connecticut Public Health Committee, Capitol Legislative Office Building, Hartford, CT (February 28, 2014)

Infection Control Nurses of Connecticut Annual Spring Seminar, Plantsville, CT (April 2013)
“CMV: Threat to immunocompromised persons” - Aqua Turf Club.
Contact Kris Magnussen, Communicable Disease Prevention Supervisor,

CMV 2012 ConferenceSan Francisco, CA (October 29-November 2, 2012)
“Raising CMV Awareness by Writing” - Conference Mission Bay Conference Centre. Contact Lenore Pereira, Ph.D., Founder of Congenital Cytomegalovirus Foundation, and Professor, Cell and Tissue Biology Department, University of California San Francisco,

Siemens Healthcare Diagnostics, Tarrytown, NY (2010)
“Living With Congenital CMV” (webinar). Katherine Soreng, Ph.D., Director, Clinical and Scientific Marketing,; Louise Loughran,

Maternal-Infant Services Network, Orange, Sullivan and Ulster Counties, NY (March 20, 2009)
“Pregnant Women Need to Know about CMV” - Perinatal Update 2009. Contact:
Stephanie Sosnowski, BS, ICCE, CLC, Director of Community Health and Wellness,

State University of New York at Rockland, Suffern, NY (December 2, 2008)
“Tragic Kiss: Stop the Spread of CMV” – Organized by a nursing professor. 

Centers for Disease Control and Prevention (CDC), Atlanta, GA (November 5-7, 2008)
“Congenital CMV: My Daughter’s Life and Death” - First International Congenital CMV Conference held in the U.S. See: Contact Michael Cannon, Ph.D., a research epidemiologist at the CDC.

Johns Hopkins University, Baltimore, MD (Fall 1995)
“Raising my handicapped daughter” - Guest speaker to a graduate class of special education teachers, therapists, and social workers.  Contact Mary Goodin, M. Ed., OTR,

Monday, May 29, 2017

One-Page CMV Fact Sheet for Policy Makers

(Image of Elizabeth Saunders age eight. Elizabeth was born with congenital cytomegalovirus in 1989)

or see below

What is cytomegalovirus (CMV)? 
Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age. It is the leading birth defects virus passed from mother to unborn baby. Congenital (meaning present at birth) CMV can cause disabilities in unborn babies such as hearing loss, mental impairment, and cerebral palsy. Congenital CMV (or cCMV) causes more disabilities than Down syndrome, fetal alcohol syndrome, spina bifida, and pediatric HIV/AIDS (   According to the CDC:

  • Approximately 1 in 200 children is born with cCMV infection.
  • One in five babies [about 4,000 babies annually] with cCMV infection will have long-term health problems.

Is this the “kitty litter” disease? 
No, that is toxoplasmosis, which causes fewer birth defects than cCMV.

How can CMV be avoided?
  • ·         Wash hands often with soap and water for 15-20 seconds, especially after wiping runny noses, changing diapers, picking up toys, etc. If soap and water are not available, use alcohol-based hand gel.
  • ·         Use soap and water or a disinfectant to clean hard surfaces that have been contaminated by secretions.
  • ·         Don’t kiss young children on the lips or share food, drinks, or eating utensils with them.
SUMMARY: 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” (Adler, 2015). 

Why don’t doctors routinely warn women of childbearing age about congenital CMV?
Fewer than half (44%) of OB/GYNs surveyed reported counseling their patients about preventing CMV infection.

  • Don’t want to frighten their patients: "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.” (OB/GYN quoted in FitPregnancy magazine, June/July '08).
  • In 2015, the American College of Obstetricians and Gynecologists (ACOG) stated that their patients will consider prevention guidelines difficult to implement—“especially if they are told not to kiss their toddlers on the mouth — a possible route of transmission.”(CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed, New York Times, 2016)

How many women know about congenital CMV? 
Only 9 % of women surveyed about CMV heard of it (Doutre et al., 2016).

What about a vaccine against CMV? Researchers have been working on a vaccine against HCMV (human cytomegalovirus) for years. One reason for delay in successful development is “there has been insufficient education about the problem of HCMV infection…”

What can we do to protect our children from CMV? 
Educate the public! “Despite being the leading cause of mental retardation and disability in children, there are currently no national public awareness campaigns to educate expecting mothers about congenital CMV,” states Clinical Advisor articleEducate pregnant women to prevent congenital CMV” (2014). Pass a bill similar Utah’s H.B 81 (2013) requiring cCMV prevention education plus testing newborns for cCMV if they fail hearing screen tests so their families can be educated about early intervention services and treatment options. To test for CMV, a saliva or urine sample is collected from the newborn and sent to a laboratory.

Cost of a CMV bill? 
Example: in 2014, Connecticut put CMV prevention education at $40,000 first year. Newborn hearing tests are already required in CT (and most states) and insurance pays for CMV testing (estimated at $150) if baby fails the hearing screen.

What is the annual cost of caring for children disabled by cCMV in the U.S.?
$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).

Annual cost of caring for children disabled cCMV by state? 
In 2015, 3,978,497 babies were born in U.S. with .1% disabled by cCMV = 3,978 babies.  Example state: in 2015, Connecticut’s annual cost of caring for children disabled by cCMV can be calculated at 35,746 births x .1% cCMV disabled = 36 babies X $300,000/year = $10,800,000 or nearly $11 million annually.  

Which women are at greatest risk for contracting CMV? 
According to the CDC, "People who care for or work closely with young children may be at greater risk of CMV infection than other people because CMV infection is common among young children..."
1.      Parents of children in day-care centers are at increased risk for contracting CMV (Pass et al, 1986).
2.      Day-care workers are at greater risk (Joseph, et al., 2006). Caregivers/teachers should be told about CMV because of increased probability of exposure (American Academy of Pediatrics et al.. 2011). “Providers do not know how to appropriately sanitize surfaces ...” Many providers use diapers wipes to clean a surface. Diaper wipes do not sanitize (Thackeray et al., 2016).

Will it make a difference if women are educated on CMV prevention? Yes, according to the New York Times, “pregnant mothers shown a video and offered hygiene tips were much less likely to get CMV (5.9 percent) than those not given information on prevention (41.7 percent)” (Saint Louis, 2016). Five CMV prevention education studies published between 1993 and 2015 were analyzed in the article, Prevention of Maternal–Fetal Transmission of Cytomegalovirus: “In each report, the efficacy of hygienic precautions has been > 75%...For seronegative pregnant women who are at high risk because of exposure to a young child in the home or in large group childcare, hygienic precautions are simple, inexpensive, and highly effective” (Adler, 2015). 
* Fact sheet prepared by Lisa Saunders of Mystic, CT, parent representative of the Congenital CMV Foundation. Bibliography found at