“Wash Away CMV: Protect Your Pregnancy”
Most pregnant women know to avoid dirty
kitty litter and mosquito bites to protect their unborn babies from disabilities
caused by infections. Very few, however,
know how to prevent the leading viral cause of birth defects, congenital CMV. Congenital (present at birth) CMV is a more common cause of disabilities than fetal
alcohol syndrome and spina bifida. Of the four million infants born each
year in the U.S., approximately 1% are infected prenatally with CMV according to the American Academy of Pediatrics (AAP). Ten
percent of those infants, about 4,000 babies each year, are born with one or
multiple abnormalities including hearing and vision loss; intellectual
challenges; cerebral palsy; and seizures.
CMV is often found in the bodily
fluids of otherwise healthy toddlers. Toddlers can spread the disease to other
toddlers by mouthing each other’s toys, and to their adult caregivers who may
be unaware of how to properly handle bodily fluids such as saliva and nasal
secretions. Unfortunately, most women of childbearing age don’t know about CMV,
and don’t realize they should avoid kissing toddlers around the mouth, as well
as sharing cups and utensils with them. I was one of those women.
While I was pregnant with Elizabeth,
I operated a licensed home daycare center, volunteered in our church nursery,
and was the mother of a toddler—all things that put me at higher risk for
contracting CMV.
My pregnancy with Elizabeth, due to
be born on Christmas Eve of 1989, was a happy experience—until the moment she
arrived on December 18th. Upon looking at her, I felt a stab of fear. My
immediate thought was, “Her head looks so small—so deformed.” After a CAT scan,
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." Further tests revealed Elizabeth's birth defects
were caused by congenital CMV.
I was then given information from the
Centers for Disease Control and Prevention (CDC) stating 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. Nowhere in my daycare licensing
training was CMV mentioned. CMV prevention was not discussed in my prenatal
doctor visits.
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. 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. Although Elizabeth was profoundly mentally impaired,
legally blind, had cerebral palsy, epilepsy and a progressive hearing loss, we were
eventually able to move forward as a happy, "normal" family.
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, major surgeries, and seizures. Weighing only 50 pounds,
she looked funny to strangers because of her small head and adult teeth, but she
was lovely to us with her long brown hair, large blue eyes and a soul-capturing
smile. She even won the "Best Smiling Award" at school. Although
still in diapers and unable to speak or hold up her head, Elizabeth loved going
for long car rides. She especially enjoyed 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."
In 2006, 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 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.”
Shortly after Elizabeth died, I had
a nightmare: visiting a support group of new parents of children with
congenital CMV, they suddenly looked at me and asked, “Why didn’t you do more
to warn us about CMV?”
In 2012, because of my online
presence as a writer and speaker about CMV, I received an email from a
grandmother distraught about her grandson born with congenital CMV. The baby’s
mother was a high school student interning in a Connecticut childcare center.
The young mother, just like me many years earlier, was unaware she was putting
her pregnancy at greater risk by working with toddlers. Eight - 20% of caregivers/teachers contract CMV
(AAP et al., 2011). About 44 to 100% of two-year-olds in group daycare are
excreting CMV (Pass et al., 1986).
When I visited the new mother and
baby in the hospital, the attending nurse asked me, "Knowing what you do
about CMV, why don’t you launch an awareness campaign?"
I explained to the nurse that CMV
parents, scientists and doctors have been trying for years to raise awareness
but we can’t sustain meaningful, long-term change without government help. “Despite
being the leading cause of mental retardation and disability in children, there
are currently no national public
awareness campaigns on CMV” (Clinical
Advisor, 2014).
I finally made some headway in 2015.
By modeling efforts in Utah, I helped Connecticut become the second state to
pass a law requiring babies who fail their hearing exam to be tested for CMV.
But CMV prevention education is also needed—especially since studies have shown
that the effectiveness of hygienic precautions is greater than 75% (Adler, 2015).
According to a recent study, only
18.5% of licensed “in-home” daycare providers have heard of CMV and “Providers
do not know how to appropriately sanitize surfaces to reduce spread of disease” (Thackeray et al., 2016). For example,
many providers use diaper wipes to clean a surface, but diaper wipes do not
sanitize it. Given that “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.”
My goal is to make CMV prevention
required training in child care centers across the country. The American
Academy of Pediatrics states in their book, “Caring For Our Children,” that “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.”
“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).
According to the Occupational Safety
and Health Administration (OSHA), it is a worker's right to know
occupational hazards. Given there are more than half a million child care
workers in the U.S. (Childcare Aware of America, 2016), that mothers of
children in daycare are also at increased risk for CMV (Pass et al., 1986), and
that congenital CMV costs the U.S. health care system approximately 1.86
billion annually (Modlin, et al., 2004), it’s time for a national CMV
prevention campaign.
To help prevent CMV (and other
diseases spread by saliva), I provide educational materials for the whole
family with my “color-me-in” fairytale, “Once Upon a Placemat: A Table Setting Tale,” which includes a free teaching toolkit. The fairytale, co-authored by my
daughter Jackie Tortora, uses "Grandma" to speak for “Miss Cup” to
enforce germ prevention, and features “Mr. Knife's” fear of the dish running
away with the spoon to teach table-setting. The teaching toolkit includes placemats, with the tableware characters correctly arranged, for downloading, coloring
and laminating. The other side of the placemat features germ prevention and hand-washing tips. A YouTube video introduces children to the placemat
characters and how to download the free placemats.
I present CMV prevention education
through workshops, public service announcements, health fairs, and my articles
such as "The Danger of Spreading CMV: How We Can Protect Our Children" (ChildCare Aware of America, 2017). I interview health experts,
including Yale University doctors, on “The Lisa Saunders Show” (SEC-TV, channel
12 and YouTube) and regularly write about CMV in newsletters to healthcare
professionals, for my “Congenital CMV” blog, and for germ-fighting
organizations such as “Henry the Hand.” My Facebook pages, "CMV in Child Care" and "Congenital CMV News," encourage behavioral changes through hand-washing
and no cup sharing campaigns.
Upon request, I lecture at
conferences nationwide such as those held by the
CDC, Society of Maternal Fetal Medicine, Maternal and Child Health Coalition,
and Infection Control Nurses of Connecticut.
As a result of me contacting
organizations, OSHA is now creating a CMV publication for childcare workers,
the MotherToBaby.org updated their CMV fact sheet to add occupational exposure,
and the Connecticut Office of Early Childhood’s Division of Licensing for Child Care Providers/Operators now includes Congenital Cytomegalovirus (CMV) under “Disease and Prevention” on its website.
Thank you in advance for your help!
###
My CMV presentations include:
Visiting Nurse Association of
Southeastern Connecticut, Waterford, CT (Oct. 4, 2017)
Society of Maternal Fetal
Medicine, Las Vegas, NV (January
26, 2017)
"Congenital CMV and Research" – Caesars Palace. www.smfm.org/meetings/2-37th-annual-pregnancy-meeting.
Contact: Sabine Bousleiman M.S.N,M.S.PH, Program Director, Columbia University,
OBGYN Department, (212) 305-4348, (917) 673-7790, sb1080@cumc.columbia.edu.
Maternal and Child Health (MCH)
Coalition, Hamden, CT (December 13,
2016)
Women's Consortium:
www.womensconsortium.org. Contact Marijane Carey, mjcarey95@aol.com
Congenital CMV Public Health
& Policy Conference, Austin,
TX (September 27, 2016)
“Connecticut and Congenital CMV”. www.cga.ct.gov/med/default.asp. Richard
Eighme, Medical Assistance Program Oversight Council, (860)
240-0321, Richard.eighme@cga.ct.gov, or Rep. Susan
Johnson, Johnson@cga.ct.gov
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”.
www.cmvconference.org/archive/cmv2014/index.html. 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
& Registry, 832-824-4330,
gjdemmle@texaschildrens.org
Westerly Registered Nurse’s Club, Westerly, RI (April 22, 2014)
“Supporting a Connecticut CMV Bill,”
Mermaid Café. Contact: Ida Manzella, imanzella@comcast.net
Connecticut Public Health
Committee, Capitol Legislative Office Building,
Hartford, CT (February 28, 2014)
Public Testimony for H.B. 5147: “AN ACT CONCERNING
NEWBORN SCREENING FOR CYTOMEGALOVIRUS AND ESTABLISHING A PUBLIC EDUCATION
PROGRAM FOR CYTOMEGALOVIRUS.”
Infection Control Nurses of
Connecticut Annual Spring Seminar, Plantsville,
CT (April 2013)
“CMV: Threat to immunocompromised
persons” - Aqua Turf Club. http://infectioncontrolct.org/.
Contact Kris Magnussen, Communicable Disease Prevention
Supervisor, KMagnussen@llhd.org
CMV 2012 Conference, San Francisco, CA (October 29-November
2, 2012)
“Raising CMV Awareness by Writing”
- Conference
Mission Bay Conference Centre. www.congenitalcmv.org. Contact Lenore Pereira, Ph.D., Founder of Congenital Cytomegalovirus
Foundation, and Professor, Cell and Tissue Biology Department, University of
California San Francisco, lenore.pereira@ucsf.edu
Siemens Healthcare
Diagnostics, Tarrytown, NY (2010)
“Living With Congenital CMV”
(webinar). https://usa.healthcare.siemens.com. Katherine Soreng, Ph.D.,
Director, Clinical and Scientific Marketing, katherine.soreng@siemens.com;
Louise Loughran, louise.loughran@siemens.com
Maternal-Infant Services
Network, Orange, Sullivan and Ulster
Counties, NY (March 20, 2009)
“Pregnant Women Need to Know about
CMV” - Perinatal Update 2009. www.misn-ny.org. Contact:
Stephanie Sosnowski, BS, ICCE, CLC,
Director of Community Health and Wellness, ssosnowski@misn-ny.org
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)
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, Ssagoodin@cs.com
I also present CMV awareness to
local women’s groups such as:
The Woman’s City Club of
Norwich, Norwich, CT (2015)
“How a Mother Raised Awareness of
CMV and Got Connecticut to Pass a Bill.” Otis
Library. Contact Eileen Nagel, eileen.nagel@snet.net
