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Lisa Saunders is seen below holding a photograph of her daughter Elizabeth (1989-2006) with Connecticut Governor Dannel P. Malloy at the ceremonial signing for “Public Act 15-10: An Act Concerning Cytomegalovirus” at the Office of the Governor in Hartford, CT, on July 28, 2015.
Lisa Saunders is the mother of a Elizabeth born severely disabled by congenital cytomegalovirus (CMV) in 1989. Just prior to her pregnancy with Elizabeth, Lisa had a miscarriage but was not tested for CMV or other prenatal infections. Until Elizabeth's birth, Lisa was unaware of CMV and although she was a licensed, in-home child care provider, a church nursery volunteer and the mother of a toddler--all activities that put her at high risk for CMV--she was not educated about the disease and how to reduce her chances of contracting it. In 2015, Lisa was instrumental in helping Connecticut become the second state in the U.S. to enact a law requiring the testing of newborns for CMV if they fail their hearing screen. A graduate of Cornell University, Lisa is a public speaker, an award-winning writer and the author of several books--some with a CMV prevention message. She is the leader of the Child Care Providers Education Committee with the National CMV Foundation. |
Click here to download and print the Resume/CV of Lisa Saunders
Lisa Saunders provides presentations and educational materials for the whole family to stop the spread of cytomegalovirus (CMV)--a far bigger threat to newborns than Zika. She lectures on CMV for organizations such as the Centers for Disease Control and Prevention, Society of Maternal Fetal Medicine, Infection Control Nurses of Connecticut, and Siemens Healthcare Diagnostics.
Lisa interviews health and wellness experts on the Lisa Saunders TV Talk Show (SEC-TV, channel 12), which is also uploaded to YouTube.
Lisa interviews health and wellness experts on the Lisa Saunders TV Talk Show (SEC-TV, channel 12), which is also uploaded to YouTube.
Lisa can present on the following topics:
- What Caregivers and Pregnant Women Need to Know About CMV
- My Story and CMV (includes research)
- Connecticut and Congenital CMV
- How a Parent Can Raise a CMV Prevention Message (including how to get a law passed)
Her work on Connecticut's new CMV law was featured in Cornell Alumni and Connecticut magazines and by the Daughters of the American Revolution. Lisa writes extensively about congenital CMV for her Congenital CMV blog, press releases, newsletters, and articles, such as "The Danger of Spreading CMV: How We Can Protect Our Children" (ChildCare Aware of America, 2017). She manages the Facebook pages, CMV in Child Care and Congenital CMV News and created a one-page CMV fact sheet for policy makers. Her bibliography with links to sources can be accessed here.
From Lisa Saunders
Charles R. Drew University of Medicine and Science, Los Angeles, California (March 6, 2019)
From Lisa Saunders
I am the leader of National CMV Foundation’s Childcare
Providers Education & Outreach Committee and parent
representative of the Congenital Cytomegalovirus (CMV)
Foundation. I offer
books,
videos, flyers and presentations to prevent the leading viral cause of birth
defects, congenital CMV, which is estimated to disable 4,000 newborns each year
in the U.S. The cost of congenital CMV to the U.S. health care system is approximately
$1.86 billion annually, with a cost per child of more than $300,000 each year
(Modlin, et al., 2004).
CMV is
often found in child care centers. Most pregnant women contract CMV from young
children in their care. Child care providers and mothers of children in group
care are at increased risk for CMV but few know how to reduce their chances of
contracting it. When I was pregnant with my daughter Elizabeth, born severely
disabled by congenital CMV in 1989, I was a licensed child care provider and
the mother of a toddler.
Recent
CMV Awareness Successes (2015 – 2018)
- In 2015, I helped Connecticut become the second state in U.S. to
require CMV testing when an infant fails their hearing test.
- Occupational Safety and Health Administration (OSHA) is now
working on a publication to provide CMV prevention education for childcare
workers.
- Connecticut Office of Early
Childhood’s Division of Licensing for Child Care
Providers/Operators now includes “Congenital Cytomegalovirus” under “Disease and Prevention” on its website.
My ultimate goal, however, is for CMV prevention to be included in the
required training for licensing.
- The MotherToBaby.org Education Committee updated their CMV fact sheet to add a question
specific to occupational exposure.
My 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 book, Caring
For Our Children, in “Standard 7.7.1.1: Staff Education and Policies on
Cytomegalovirus (CMV),” which states that caregivers/teachers should be informed about
their increased probability of exposure to CMV and: “Hygiene measures
(especially handwashing and avoiding contact with urine, saliva, and nasal
secretions) aimed at reducing acquisition of CMV…The availability of counseling
and testing for serum antibody to CMV to determine the caregiver/teacher’s
immune status.”
My work includes:
- Writing adult and children’s books and articles on CMV prevention.
- Lecturing on CMV
prevention, legislation, and research.
- Interviewing health and
wellness experts on my TV talk show (SEC-TV, channel 12), which is also
uploaded to my YouTube
channel.
- Coordinate the planning
and delivery of CMV information (press releases, newsletters,
Facebook: CMV in Child
Care and Congenital
CMV News); educational campaigns (workshops, televised public
service announcements); behavior change programs (“Keep Your Cups to
Yourself”), CMV risk assessments (health fairs); hand-washing; and
more.
Qualifications for CMV Work:
- Education: Cornell University, Ithaca, NY: B.S. - Business
Management and Marketing (1982).
- Parent representative of the Congenital
Cytomegalovirus Foundation.
- Global Congenital CMV Network, Congenital CMV Partnership Team.
- Former licensed child care provider (1986-1989).
- Mother of child who suffered from congenital CMV for 16 years (1989-2006).
- International author of books providing a CMV prevention message.
- Former campus communications writer for the State University of
New York at Rockland.
- Commendations: Infection
Control Nurses of Connecticut: Honored for “Unwavering
dedication in her crusade to stop CMV (2013) and Cornell
University President, David J. Skorton, MD: Letter of appreciation for CMV work
(2013)
CMV
PRESENTATIONS INCLUDE
American
Industrial Hygiene Association (AIHA), Connecticut River Valley (Oct. 3, 2019)
Presentation: “What Child Care
Providers, Teachers and Pregnant Women Need to Know About CMV”. AIHA
works to provide information and resources to Industrial Hygienists and
Occupational Health professionals. Contact: Nellie Brown, MS, CIH, Director of Workplace Health
& Safety Programs, Lead Programs Manager, Certified Industrial
Hygienist, The Worker Institute, Buffalo, NY 14203. ILR
School, Cornell University, t. 716 852 1444 x111, njb7@cornell.edu | www.ilr.cornell.edu
Charles R. Drew University of Medicine and Science, Los Angeles, California (March 6, 2019)
Good
News Radio Magazine: "Prenatal
Infections". Co-presented with James A. McGregor,
MDCM (obstetrician and gynecologist) and
Marti Perhach, CEO, Group B Strep International. Contact: Andrea Jones, Projects Specialist, Healthy African American Families,
AndreaJones@haafii.org
Prenatal Infection
Prevention Symposium,
online (Feb. 26, 2019)
Video
presentation: “Help
Child Care Providers Fight Cytomegalovirus (CMV): Protect Newborns From #1
Birth Defects Virus.” Contact:
Marti Perhach, Group B Strep International (GBSI) Cofounder and CEO: marti.perhach@gbs-intl.org
University of Massachusetts
Medical School,
Shewsbury, Massachusetts (Jan. 16)
Meeting
presentation: “Connecticut Experience with CMV Testing Legislation: Barriers and Solutions".
Contact leader of Massachusetts Congenital CMV Working Group: Laura Gibson, M.D., Associate
Professor, Infectious Diseases and Immunology, Chief, Division of
Medicine-Pediatrics, Departments of Medicine and Pediatrics, University of Massachusetts
Medical School, laura.gibson@umassmed.edu
CMV Public Health and Policy Conference, Burlington, Vermont (Sept. 24, 2018)
Poster: "Increasing
Child Care Provider Awareness of Congenital Cytomegalovirus”, co-presented with Brenda Kinsella Balch, MD,
Connecticut Chapter Champion for the American Academy of Pediatrics Early
Hearing Detection and Intervention Program. Contact: President, National CMV
Foundation: kristen.spytek@nationalcmv.org
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. Sabine
Bousleiman M.S.N,M.S.PH, Program Director, Columbia University, OBGYN
Department, (212) 305-4348, (917) 673-7790, sb1080@cumc.columbia.edu. See
study: https://clinicaltrials.gov/ct2/show/NCT01376778
Maternal and Child
Health (MCH) Coalition, Hamden, CT (December
13, 2016) “What Caregivers and Pregnant Women Need to Know About
CMV”.
Women's
Consortium: www.womensconsortium.org. Marijane Carey, mjcarey95@aol.com
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.
http://cmvconference.org/.
Medical
Assistance Program Oversight Council's Women’s Health Committee, Hartford, CT (July 13, 2015) “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
Connecticut Public Health
Committee, Capitol Legislative
Office Building, Hartford, CT (February 20, 2015). Public Testimony for H.B.
5525: “AN ACT CONCERNING
CYTOMEGALOVIRUS”
CMV Public Health & Policy
Conference, Salt Lake City, UT
(September 26, 2014)
“How
a Parent Can Raise a CMV Prevention Message”.
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,
cmv@bcm.edu
Infection Control Nurses of
Connecticut Annual
Spring Seminar, Plantsville, CT (April 2013)
“CMV: Threat to
immunocompromised persons” - Aqua Turf Club. http://infectioncontrolct.org/.
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. congenitalcmv.org. Lenore
Pereira, Ph.D., Founder, 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. Stephanie Sosnowski, BS, ICCE, CLC, Director of
Community Health and Wellness, ssosnowski@misn-ny.org
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: http://congenitalcmv.blogspot.com/2008/11/cdc-congenital-cmv-cytomegalovirus-and.html.
Michael Cannon, Ph.D. mrc7@cdc.gov,
a research epidemiologist at the CDC.
Additional Presentations:
Visiting Nurse
Association of Southeastern Connecticut, Waterford, CT (Oct. 4, 2017). “CMV: Protect Your Pregnancy.”
www.vnasc.org. Contact: Deborah Buxton-Morris, M.S., R.N. Program Supervisor, dbuxton-morris@vnasc.org
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.”
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.
Eileen Nagel,
eileen.nagel@snet.net
Westerly
Registered Nurse’s Club, Westerly, RI (April 22, 2014)
“Supporting a Connecticut CMV
Bill,” Mermaid Café. Ida Manzella, imanzella@comcast.net
State University of New
York at Rockland,
Suffern, NY (December 9, 2008)
Science
Lecture Series, #2: “Anything But a Dog”: Story of my daughter
born with congenital CMV. Series organized by a nursing professor.
BOOKS, VIDEOS, ARTICLES AND OTHER RESOURCE
MATERIALS
Books
- Help Childcare Providers
Fight CMV. A workbook for child care directors
and policy makers (2018).
- Anything But a Dog! The
perfect pet for a girl with CMV. A memoir (Unlimited
Publishing, 2008, Japan: Thousand Books, 2017)
- Surviving Loss: The Woodcutter’s Tale: Fairytale about losing a child plus
moving forward (2013)
- Once Upon a Placemat: A Table Setting Tale. An educational coloring book for families
and child care centers. "Grandma" uses
Miss Cup to insist on germ prevention. She also discusses Mr. Knife's fear
of the dish will running away with the spoon to teach table-setting. FREE
Teaching Toolkit includes a "Color-me-in" placemat with tableware
characters with Miss Cup's germ prevention tips.
Videos
- Educational Video: Help Child Care Providers and Moms Fight CMV
- Video geared to children: Introduces the placemat
characters from Once Upon a Placemat: A Table Setting Tale and why germ
prevention is important.
Articles
- "The
Danger of Spreading CMV: How We Can Protect Our Children" by Lisa
Saunders published by ChildCare Aware of America (June 2017).
- “Help
Childcare Providers Fight CMV” by Lisa Saunders published by
National CMV Foundation (March 5, 2018)
- CMV:
The Virus Nobody Talks About. Siemens Healthcare Diagnostics magazine,
p. 41. (2010, Fall).
- Family
Health: The Tragic Kiss--Suffern Mom Works to Spread Word About CMV. Rockland Parent
Magazine. (2007, September).
- Pregnant
Women: Learn Risk of CMV. The Journal News, p. 4B. (2007, January 28).
- Epilepsy:
Elizabeth, Forever Sweet Sixteen. CURE (Citizens United for Research in
Epilepsy) Newsletter, p. 5. (2006, Summer).
- Elizabeth:
A Christmas Blessing. Challenge Magazine, 2(4), pp. 14, 16.
(1994).
Flyers
- Above-sink wall flyer on hand-washing, "Share a Meal Not the Germs"
- Above-sink wall flyer for hand-washing, "Diaper Wipes Don't Kill CMV"
- Wall Flyer For Women Who Care for Toddlers
- Tri-fold Flyer for Daycare Directors/Providers
- Warning Photograph for Wall/Sharing on
Social Media
Music (collaborated with
singer/songwriter Debra Lynn Alt)
- Song, “Had I Known (about CMV)” by Debra Lynn
Alt. Inspired by my story.
- Music/image
video about my daughter’s life includes CMV prevention: Girl with congenital cytomegalovirus (CMV) set to song,
"Voice for Sam," by Debra Lynn Alt
PROFESSIONAL EXPERIENCE
INDEPENDENT
WRITING/MARKETING CONSULTANT, Nov. 2010 – Present
- Content Coordinator, Groton-Mystic Neighbors magazine
(Best Version Media publication), since March 2018.
- New
England/New York media and networking consultant. Write press releases, biographies, and
marketing materials for clients that include National Field Service
Corporation and Connie Howard Music.
MYSTIC SEAPORT, Mystic, CT, 2010 –
Present (part-time)
Historical
Interpreter: Orally present maritime history and artifacts to the general
public.
STATE UNIVERSITY OF NEW
YORK AT ROCKLAND,
Suffern, NY, 2006 – 2010
Campus
Communications Assistant
- Promoted
events and programs to the media, authoring press releases, which resulted
in newspaper coverage of the college and faculty. Wrote the alumni
newsletter, SCENE, with
quarterly circulation of 35,000. Used Twitter, Facebook, and RCC Speakers
Bureau as additional promotional tools.
Key
Accomplishments
- Awarded
by the National Council for Marketing & Public Relations, District I:
“Gold Medallion” for Academic Convocation Booklet (2010); Silver for
Departmental Brochures (2010); and Bronze for ad print series, which
featured noteworthy alumni (2009).
- Received
national coverage on Fox and Friends and in Associated Press through press
releases relating the circumstances of individual students or faculty to
current events.
NATIONAL FIELD SERVICE
CORPORATION,
Suffern, NY, 1998 – 2008 (presently consulting)
Recruiter
/ Marketing Specialist for consulting company
Interviewed
approximately 80 candidates monthly and communicated with clients on employment
needs in the utility, communications, and right-of-way industries. Represented
company at job fairs and coordinated marketing events, including annual
100-guest Christmas party and sleepover event at West Point Academy. Placed
many applicants with AT&T. Maintained database of applicants in People
Trak.
LICENSED HOME DAY CARE
PROVIDER,
Rockville, MD, 1987-1993
Provided
in-home care and educational programs for up to six children.
Ceremonial bill signing for Public Act 15-10: An Act Concerning Cytomegalovirus at the Office of Governor Dannel P. Malloy on 7/28/15. L to R: Jane Baird, Government Relations, Connecticut Children's Medical Center; Dr. Wallis Molchen, Chief Resident, Connecticut Children’s Medical Center; Jane Brancifort, Deputy Commissioner, Connecticut Department of Public Health ; John Hampton For State Representative; Dr. Brenda K. Balch, American Academy of Pediatrics EHDI (Early Hearing Detection and Intervention)Chapter Champion; Office of Lt. Governor Nancy Wyman; Lisa Saunders, Author/TV Host; parent representative, Congenital Cytomegalovirus Foundation, holding photo of daughter Elizabeth of Anything But a Dog - Girl with congenital CMV - cytomegalovirus ; State Representative Kevin Ryan; Governor Dannel P. Malloy; Cathy Osten for the 19th District State Senator; Ken Hiscoe, Pfizer, Government Relations; Jarred and his mother, Melvette Ruffin; DeVaughn Ward, Liaison, Department of Public Health; and Kinson Perry, lobbyist at Rome, Smith & Lutz.
ARTICLES and TV
INTERVIEWS THAT INCLUDE MY COMMENTS OR CMV WORK
- News 8: Mystic mother raises awareness of CMV, a risk for
pregnant women and their babies (Sarah Cody, June 13, 2018)
- Sarah
Cody, News Reporter, Facebook CMV Prevention video (June 2018)
- Connecticut
Magazine: Mystic Mom 'Overwhelmed' by Governor Signing Law
on ‘Stealth Virus’ That Can Catch Pregnant Women Unaware (2015)
- Cornell
Alumni Magazine:
In Memory of Elizabeth: Her daughter's
death from a preventable disability spurs Lisa Avazian Saunders '82 into
action (2015)
- Clinical
Advisor
magazine: “Connecticut passes cytomegalovirus screening
law for newborns” (2015)
- News 8 Medical/Health
Report: "Mystic mom raising awareness about potentially
deadly virus" (2015)
- News 8: Preventing Congenital CMV During
Pregnancy (2015)
- Fox CT, Hartford Courant: Mother Working to Protect Pregnant Moms From
Dangerous Virus (2014)
- Mystic River Press: Saunders seeks help with CMV ‘silent virus’
prevention bill (2014)
- Grace Magazine (The Day): "Loss and love: Author raises awareness
about preventable birth defect" (2013)
- Times
Herald Record: What every pregnant woman needs to know
(2009)
- New
York Times:
CMV Is a Greater Threat to
Infants Than Zika, but Far Less Often Discussed (2016).
Interviewed about the Connecticut CMV bill. My book about daughter’s life
with congenital CMV seen in background of embedded “Questions & Answers About CMV on Facebook Live.”
- Early Childhood Collaborative of Southington
(2016)/“Childcare Providers: 13 Things You Should Know”
Ongoing CMV
Awareness Work
- Promoting and marketing CMV prevention programs to target populations such as child care workers and women of childbearing age by utilizing existing resources such as those created by the Centers for Disease Control and Prevention (CDC), National CMV Foundation, Congenital CMV Disease Research, Clinic & Registry, Congenital Cytomegalovirus Foundation, and National CMV Registry for Pregnant Women (part of the CMV Research Foundation Inc.), in addition to other birth defects prevention organizations.
- Sharing
health promotion and disease prevention campaigns through national
observances: June: National Congenital CMV
Awareness Month, October: 15 - 21 International Infection
Prevention Week; October
15: Global Handwashing Day; January: National Birth Defects
Prevention Month; February: International Prenatal
Infection Prevention Month; and April: National Public
Health Week.
- Consulting regularly with the country's leading CMV medical
experts. Contacting relevant organizations requesting CMV education be
included in training materials, literature and websites. Consulting
with legislators to create CMV prevention education laws--particularly in
regard to child care centers. Maintaining an extensive bibliography
with live links to resource articles and presentations.
LETTER FROM LISA SAUNDERS
“Wash Away CMV: Protect Your Pregnancy”
I am Lisa Saunders, the mother of Elizabeth,
born severely disabled by congenital cytomegalovirus (CMV). My mission is to
prevent Elizabeth’s suffering from happening to other children. According to
the New York Times in 2016, CMV
Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed.
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.
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?”
Although I had written about Elizabeth’s life with her tomboy sister
and a series of dysfunctional pets in my book, “Anything But a Dog: the perfect pet for a
girl with congenital CMV,” which was also published in Japan, CMV remains largely
unknown.
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.
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.
If you can help raise CMV awareness, according to studies on prevention, our
nation should have a higher number of healthy newborns.
Thank you in advance for your help!
###
My CMV presentations include:
Visiting Nurse Association of
Southeastern Connecticut, Waterford, CT (Oct. 4, 2017)
“CMV: Protect Your Pregnancy.” Contact: Deborah
Buxton-Morris, M.S., R.N.
Program
Supervisor, Nurse-Family Partnership of Eastern Connecticut, dbuxton-morris@vnasc.org.
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)
“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. http://cmvconference.org/.
Medical Assistance Program Oversight
Council's Women’s Health Committee, Hartford, CT
(July 13, 2015)
“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)
Public Testimony for H.B. 5525: “AN ACT CONCERNING CYTOMEGALOVIRUS”
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)
“Congenital CMV: My Daughter’s Life and
Death” - First International Congenital CMV Conference held in the U.S.
See: http://congenitalcmv.blogspot.com/2008/11/cdc-congenital-cmv-cytomegalovirus-and.html. Contact Michael Cannon, Ph.D. mrc7@cdc.gov, 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, 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
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Anything But a Dog! The perfect pet for a girl with CMV (cytomegalovirus) (my memoir about my daughter's life). |
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Survivng Loss: The Wooder's Tale (a fairy tale inspired by my daughter's death and belief we will all be reunited one day) |
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Once Upon a Placemat--A table setting tale: Coloring book and CMV prevention tips from Miss Cup. (Click here for video of me introducing book and here for placemats for downloading and coloring.)
Mystic Seafarer's Trail: Misadventures trying to get thin and famous so people will hear about CMV (2012)
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Contact Lisa Saunders
PO Box 389, Mystic, CT 06355, LisaSaunders42@gmail.com
Types of Organizations Lisa collaborates with: click here