Wednesday, December 7, 2016

Lisa Saunders, author and TV host: Death of a child--The Woodcutter's Tale

Lisa Saunders, author and TV host: Death of a child--The Woodcutter's Tale: My father felt inspired to write this short fairytale after my daughter died. Her entire life had been a struggle with congenital cytomega...

After Losing a Child: My Christmas wish for others

Dear Santa,

     When my hound Doolittle and I stopped in front of the "Letters to Santa" mailbox in downtown Mystic, Connecticut, Doolittle’s look of optimism gave me the idea to write to you. Perhaps you can grant me my deepest, sincerest wish—that no more babies will suffer from congenital cytomegalovirus (CMV).

My daughter Elizabeth, born on December 18, 1989, would have been 27 this Christmas 2016 if she hadn't been born with congenital CMV. 
Expecting Elizabeth, due to be born on Christmas Eve of 1989, had been an exciting experience. But the moment she arrived on the 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed.”The neonatologist said, "Your daughter has microcephaly--her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV). Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them. 
Why hadn’t I heard of CMV before and the precautions to tak? While I was pregnant with Elizabeth, I not only had a toddler of my own, but I also ran a licensed daycare center in my home. I felt sick at what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.

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

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

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

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

As we prepare to celebrate our 11th Christmas without Elizabeth, it is with some heartache that I bring down the holiday decorations from the attic. Elizabeth used to love to sit on the couch with her big, once homeless old dog Riley, and watch us decorate. (Their story is told in my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV.)

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

Although I miss Elizabeth, I’m glad she is free from suffering, glad she is safe in her new, Heavenly home. 

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

When my time comes, I will see Elizabeth again. 

My father wrote a fairy tale that I found very helpful after Elizabeth died, The Woodcutter’s Tale. To read it on my blog, click here,  or download the pdf with its color images and comments by clicking here.*  

  The Only Thing I Can Do for Elizabeth Now
Since Elizabeth no longer needs my care, the only thing I can do for her now is to care for those not yet born—to prevent them from suffering as Elizabeth did. I do that by speaking and writing about congenital CMV prevention. I'm thrilled to say that Connecticut legislators finally passed a bill requiring congenital CMV testing for infants who fail their hearing screen. The prevention education part didn't pass because of funds, so it is still on my wish list for Christmases yet to come. I'm determined that childcare givers, particularly those who work in day care centers with toddlers, will learn about CMV, ask their doctors for a blood test to learn their antibody status, then determine whether or not they should work with toddlers during their pregnancy. 
After presenting the story of Elizabeth's life at the international Congenital CMV conference held at the Centers for Disease Control (CDC) in Atlanta, GA, in 2008, scientists from all over the world approached to thank me for inspiring them to continue their work. Mothers, on the other hand, pushed their children towards me in wheelchairs and asked, “Why didn’t my OB/GYN tell me how to prevent this?” One mother even asked, "Learning what you did, why didn't you do all you could to shout it from the rooftops?"
Until OB/GYNs make CMV prevention a standard practice of care, I'm trying to "shout it from the rooftops" through my writing, speaking engagements, and contacting agencies I hope will help. 


·        Coloring book: Once Upon a Placemat: A Table Setting Tale - CMV prevention from “Miss Cup” (2016)

1.      Paper placemats for downloading and coloring teach table-setting and CMV prevention
2.      Video geared to children introduces the placemat characters and how to download free placemats
·        Music/image video about my daughter’s life: Girl with congenital cytomegalovirus (CMV)·        Memoir: Anything But a Dog! The perfect pet for a girl with CMV (Unlimited Publishing, 2008, Japan, 2017)
·        Booklet: Surviving Loss: The Woodcutter’s Tale: Fairytale about losing a child plus moving forward (2013)
·        Mystic Seafarer's Trail: Misadventures trying to get thin and famous so people will hear about CMV (2012)

Facebook: I recently started a Congenital CMV News page you can "like" at:

My upcoming and past talks, plus other CMV work, can be seen by clicking here:

*(If you want to give Surviving Loss: The Woodcutter’s Tale as gift, it is available in softcover on Amazon at: Surviving Loss: The Woodcutter’s Tale. The story is an excerpt from my memoir, Anything But a Dog! The perfect pet for a girl with CMV the publisher, Unlimited Publishing LLC, gave me permission to publish this excerpt from it.)

Saturday, November 19, 2016

Lisa Saunders, Consultant and Advocate for CMV Awareness, Policy and Resources

Lisa Saunders, Consultant
Consultant and Advocate for 
CMV Awareness, Policy and Resources

Resume for downloading

I am the parent representative of the Congenital Cytomegalovirus Foundation and give CMV prevention presentations to international audiences, including the Centers for Disease Control and Prevention (CDC). In 2015, working with state legislators, government agencies, medical professionals, and the media, I helped Connecticut become the second state in the U.S. to pass a CMV law. It was highlighted in the New York Times article, CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed (Oct.25, 2016). Congenital CMV is the leading viral cause of birth defects, disabling over 5,000 babies a year in the U.S. It is estimated to cost the U.S. health care system $300,000 per child annually for a total of $1.9 billion annually. When I was pregnant with my daughter, I was a licensed day care provider and unaware of CMV, my increased risk for contracting it, and how to prevent it. In 2016, my efforts as a CMV prevention advocate were rewarded again when the Connecticut Office of Early Childhood’s Division of Licensing for Child Care Providers/Operators included Congenital Cytomegalovirus (CMV) under Disease and Prevention.”  My current work includes connecting with agencies such as Occupational Safety and Health Administration (OSHA) to encourage CMV prevention education for childcare workers. I interview experts on health and wellness for my TV talk show (SEC-TV, channel 12), which is also uploaded to my YouTube channel. I live with my husband, Jim, and hound, Doolittle, in Mystic, Connecticut (near Mystic Pizza). 

I am seen holding a photograph of my daughter Elizabeth (1989-2006) with 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, Connecticut (July 28, 2015). 

Cornell University, Ithaca, NY. B.S. — Business Management and Marketing (1982)


Society of Maternal Fetal Medicine, Las Vegas, NV (January 26, 2017)
"Congenital CMV and Research" - Caesars Palace. Info: Contact: Sabine Bousleiman M.S.N,M.S.PH, Program Director, Columbia University, OBGYN Department, (212) 305-4348, (917) 673-7790, Study seeking participants:

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

Congenital Cytomegalovirus Public Health & Policy Conference, Austin, TX (September 27, 2016)
As One Door Closed, Another Door Opened: CT Congenital CMV Initiative” - DoubleTree By Hilton. Info:  Contact Brenda Kinsella Balch, MD, a Connecticut pediatrician and Chapter Champion for the American Academy of Pediatrics Early Hearing Detection and Intervention Program,

Connecticut and Congenital CMV - State of Connecticut Capitol Legislative Office Building. Info: Contact: Richard Eighme, Clerk, Medical Assistance Program Oversight Council, (860) 240-0321,, or Rep. Susan Johnson,

CMV Public Health & Policy Conference, Salt Lake City, UT (September 26, 2014)
How a Parent Can Raise a CMV Prevention Message” - Little America Hotel. Info: 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, 832-824-4330,

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

CMV 2012 Conference, San Francisco, CA (October 29-November 2, 2012)
“Raising CMV Awareness by Writing” - Conference Mission Bay Conference Centre. Info: 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). Info: Contact: Katherine Soreng, Ph.D., Director, Clinical and Scientific Marketing,, or
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. Info: Contact: Stephanie Sosnowski, BS, ICCE, CLC, Director of Community Health and Wellness,

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.
Info: 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,

I also present CMV awareness to local groups such as:
The Woman’s City Club of Norwich (2015), “How a Mother Raised Awareness of CMV and Got Connecticut to Pass a Bill,” Otis Library, Norwich, CT. Contact Eileen Nagel,

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


·        Coloring book: Once Upon a Placemat: A Table Setting Tale - CMV prevention from “Miss Cup” (2016)
1.      Paper placemats for downloading and coloring teach table-setting and CMV prevention
2.      Video geared to children introduces the placemat characters and how to download free placemats
·        Music/image video about my daughter’s life: Girl with congenital cytomegalovirus (CMV)
·        Memoir: Anything But a Dog! The perfect pet for a girl with CMV (Unlimited Publishing, 2008, Japan, 2017)
·        Booklet: Surviving Loss: The Woodcutter’s Tale: Fairytale about losing a child plus moving forward (2013)
·        Mystic Seafarer's Trail: Misadventures trying to get thin and famous so people will hear about CMV (2012)


·        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 seen in background of imbedded “Questions & Answers About CMV on Facebook Live.”)
·        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)
·        Fox CT, Hartford Courant: Mother Working to Protect Pregnant Moms From Dangerous Virus (2014)
·        Siemens Healthcare Diagnostics magazine, “CMV: The Virus Nobody Talks About” (Fall 2010)
·        Times Herald RecordWhat every pregnant woman needs to know (2009)

·        Infection Control Nurses of CT: Honored for “Unwavering dedication in her crusade to stop CMV (2013)
·        Cornell University President, David J. Skorton, MD: Letter of appreciation for CMV work (2013)


New England/New York media and networking consultant.  Write press releases, biographies, and marketing materials for clients that include:
·        National Field Service Corporation
·        Act II Publications
·        Connie Howard Music

MYSTIC SEAPORT, Mystic, CT, 2010 – Present (part-time)
Historical Interpreter: Orally present maritime history and artifacts to the general public.

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.


Provided in-home care and educational programs for up to six children. 


·        In Prevention of Maternal–Fetal Transmission of Cytomegalovirus,” Stuart P. Adler, MD, states: "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." Contact Dr. Adler, CMV Research Foundation Inc., (804) 264-8296, 

·        New York Times article, CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed (Oct.25, 2016), included the quote: “If there was awareness about CMV, at least women working in day care and women with toddlers could potentially modify some behavior” and stated: 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). Three studies prove CMV prevention education works to reduce the transmission of the virus:
two studies in the U.S: 
"Prevention of child-to-mother transmission of cytomegalovirus among pregnant women" and 
"Prevention of Primary Cytomegalovirus Infection in Pregnancy
plus one in France: 
Does hygiene counseling have an impact on the rate of CMV primary infection during pregnancy?”

·        According the CDC, Approximately 1 in 150 children is born with congenital CMV infection (30,000 each year). About 1 in 750 children is born with or develops permanent problems due to congenital CMV infection. More than 5,000 children in the U.S. each year suffer permanent problems caused by congenital CMV. Print CDC flyer:

·        CMV is the leading viral cause of birth defects. It causes mental retardation, liver disease, cerebral palsy, and deafness, causing more disabilities than Down syndrome, as a result of infection in pregnant women. 

·        Cost of CMV to the US health care system: $1.9 billion annually in the U.S.-- $300,000/year/child. To calculate annual cost in Connecticut: $300,000/year/child x 47 children born disabled by congenital CMV in Connecticut = $14,100,000, or, over $14 million annually. (Calculations: “In the early 1990s, the expense to the US health care system associated with congenital HCMV [Human Cytomegalovirus] infection was estimated at approximately $1.9 billion annually [in U.S.], with a average cost per child of over $300,000." (Arvin et al. 2004). Although $300,000 per child annually is an old cost figure, Connecticut’s annual cost of caring for children disabled by cCMV can still be estimated at:  36,085 births X .0013 cCMV disabled = 47 babies (born disabled by cCMV in Connecticut each year) X $300,000/year = $14,100,000.

·        In 2001, the U.S. Senate recommended that “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children” and designated the month of June as "National Congenital CMV Awareness Month." 

·        The article, "Group day care and cytomegaloviral infections of mothers and children," states that between 44 to 100% of two-year-olds at a single given time were shedding CMV.  

·        In 2012, the American Academy of Pediatrics (AAP) stated their CMV policy for childcare workers: "In view of the risk of CMV infection in child care staff and the potential consequences of gestational CMV infection, child care staff members should be counseled about risks. This counseling may include testing for serum antibody to CMV to determine the child care provider’s protection against primary CMV infection…" (Page 145, AAP Redbook).

·        Article,”Cytomegalovirus as an occupational risk in daycare educators,” states: "studies in industrialized countries have confirmed that children attending daycare have higher excretion rates of CMV than children not attending day-care and that horizontal transmission is common between children in daycare and their adult contacts."  

·        Utah’s CMV prevention education law passed in 2013. See their brochure for childcare providers

· provides helpful CMV prevention tips and advice for daycare workers.

·        The National CMV Foundation provides CMV prevention tips for "Care Giver Health" and educational flyers for downloading:

·        Will it make a difference if women are educated on CMV prevention?

The scientific article, “Washing our hands of the congenital cytomegalovirus disease epidemic,”  states "because of concerns about effectiveness (i.e., Will women consistently follow hygienic practices as the result of interventions?), the medical and public health communities appear reluctant to embrace primary CMV prevention via improved hygienic practices, and educational interventions are rare. ...There is strong evidence, however, that educational interventions can prevent other infectious diseases with similar transmission modes, suggesting that effective interventions can also be found for CMV…Individual women have the right to know that, under ideal conditions, risk of child-to-mother CMV transmission can be reduced by proper hygienic practices.

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 WymanLisa 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.

ADDITIONAL IMAGES, ETC: Since Elizabeth's birth, and later death, I have written three books about congenital CMV:

Anything But a Dog! The perfect pet for a girl with CMV (cytomegalovirus) (my memoir about my daughter's life).

Survivng Loss: The Wooder's Tale (a fairy tale inspired by my daughter's death and belief we will all be reunited one day)
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)

My next CVM talk is January 26, 2017, 11:30am: "Congenital CMV and Research" at the 37th Annual Meeting of the Society of Maternal Fetal Medicine (1/23-28/2017). Caesars Palace, Las Vegas, NV. Research support staff deal with diseases in pregnancy to help find answers for prevention and treatment. This discussion will entail the story of a mother, Lisa Saunders, whose child was affected by CMV and her quest to raise awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine. She needs evidence – based medicine to support her quest. The second part, presented by Brandy Sandra Firman, BSPH, BSDMS, of Drexel University, will cover the factors that affect pregnant women who volunteer to help researchers produce the evidence needed for disease prevention and treatment. This forum is meant to explore the reasons for participating in a research trial and the need for participation in a research trial from a patient’s perspective. Info: or contact: Sabine Bousleiman M.S.N,M.S.PH, Program Director, Columbia University, OBGYN Department, (212) 305 4348 (office),  (917) 673 7790(mobile), sb1080@cumc.columbia.eduStudy seeking participants:

Contact Lisa Saunders
PO Box 389,  Mystic, CT 06355,