Your State's Day Care Licensing Division--Stopping birth defects from congenital CMV?

Can you help me? I'm looking for each state's Day Care Licensing Division information. 

When I was pregnant, I was a licensed day care provider and unaware of CMV, my increased risk for contracting it, and how to prevent it. My daughter Elizabeth was born severely disabled by congenital CMV. 

I am gathering every state's day care licensing division information to ensure they have the cytomegalovirus (CMV) prevention education materials they need to protect the health of babies born to their childcare workers and to the families who have a child in their care.

These are the kinds of things I'm hoping day care centers are providing/will provide: 

1. CMV prevention education added to the licensing training (see: https://www.daycare.com/fastfacts/illness/cytomegalovirus.html)
2. CMV prevention  education added to a childcare center’s handbook and website
3. CMV prevention discussed at center’s parent orientation
4. CMV prevention brochures (see Utah's brochure for childcare providers). 
5. Signs about CMV prevention hanging in day care centers so parents can also see them when they pick up their children (see one from National CMV Foundation below). Currently, in Connecticut, day care centers are inspected for:

Items Posted: Conspicuous/Accessible

—8. License

—9. Current Fire Marshal Certificate Date:____________

—10. DPH Complaint Procedure

__11. Food Service Certificate Date:____________

—12. Menus

—13. Emergency Plans

—14. No Smoking Signs

—15. Radon Test 

Would you be able to send me the following information with links? This is what I would like: 

1. Your State
2. State CMV Bill? Status?
3. Day Care Licensing Division 
4. Day Care licensing contact person with email and/or phone.
5. Department of Health's CMV webpage (if any)
6. Occupational Safety and Health Administration (OSHA):  Your state's office
7. Your name, title (parent/health professional, and email address (if you are willing to have it posted on my blog)

For example, the following is my state's information (I will add these below in alphabetical order): 

1. Connecticut (CT): http://portal.ct.gov/
2. CT CMV Bill Status - In 2015, H.B. 5525 was passed to test newborns who fail their hearing screen for CMV: https://www.cga.ct.gov/asp/cgabillstatus/cgabillstatus.asp?selBillType=Bill&which_year=2015&bill_num=5525+
3. CT Day Care Licensing Division: Office of Early Childhood’s Division of Licensing for Child Care Providers/Operators: http://www.ct.gov/oec/cwp/view.asp?a=4542&q=545170
4. CT Day Care Licensing Contact Person: Debra L. Johnson, Director, Division of Licensing, Connecticut Office of Early Childhood, debra.johnson@ct.gov,  860-509-8045, Valerie.L.Bryan@ct.gov
5. CT Department of Health's CMV Webpage: http://www.ct.gov/dph/cwp/view.asp?a=3138&q=527824
6. CT OSHA Office: https://www.osha.gov/oshdir/ct.html
7. My name: Lisa Saunders, CMV mom, former licensed day care provider, and parent rep, Congenital Cytomegalovirus Foundation, LisaSaunders42@gmail.com

Please send your state's licensing information to me at LisaSaunders42@gmail.com.I plan to post it on my blog as seen below, so if you don't want your name and email address listed, that's fine. 

Thank you! 

Lisa Saunders CMV Awareness and Policy Advocate, Parent Rep., Congenital Cytomegalovirus Foundation

LisaSaunders42@gmail.com | www.authorlisasaunders.com | http://congenitalcmv.org/ | PO Box 389, Mystic, CT 06355 |

SAMPLE WALL FLYER CONNECTICUT Connecticut (CT): http://portal.ct.gov/ CT CMV Bill Status - In 2015, H.B. 5525 was passed to test newborns who fail their hearing screen for CMV: https://www.cga.ct.gov/asp/cgabillstatus/cgabillstatus.asp?selBillType=Bill&which_year=2015&bill_num=5525+ CT Day Care Licensing Division: Office of Early Childhood’s Division of Licensing for Child Care Providers/Operators: http://www.ct.gov/oec/cwp/view.asp?a=4542&q=545170 CT Day Care Licensing Contact Person: 860-509-8045, Valerie.L.Bryan@ct.gov CT Department of Health's CMV Webpage: http://www.ct.gov/dph/cwp/view.asp?a=3138&q=527824 CT OSHA Office: https://www.osha.gov/oshdir/ct.html My name: Lisa Saunders,  former licensed day care provider, and parent rep, Congenital Cytomegalovirus Foundation, LisaSaunders42@gmail.com ### OKLAHOMA

1.  Oklahoma
2. State CMV Bill? No Status? Initial stages of awareness campaign with state legislators/senate, health committee
3. Day Care Licensing Division Department of Human Services
4. Day Care licensing contact person with email and/or phone.childcare.occs@okdhs.org, Phone 800-347-2276, Mailing Address: PO BOX 25352, Oklahoma City, OK 73125-0352
5. Department of Health's CMV webpage (if any) None
6. OSHA:  Your state's office

Oklahoma City Area Office
55 North Robinson - Suite 315
Oklahoma City, Oklahoma 73102-9237
(405) 278-9560
(405) 278-9572 FAX

7. Your name, title, and contact information

Cara Gluck

CMV Parent Advocate

Contact:   580-678-9509

                  carac@health.ok.gov

###

TENNESSEE

1. State: Tennessee

2. State CMV Bill Status: In February 2016, HB2397/SB2097 (CMV Awareness Bill) passed unanimously: http://share.tn.gov/sos/acts/109/pub/pc0625.pdf

Became law July 1, 2016. 

3. TN Daycare Licensing Division:

http://www.tn.gov/humanservices/topic/child-care-services
http://www.tn.gov/humanservices/article/child-care-certificate-program-office-locator

4. TN Daycare licensing person: See above office locator link. Waiting for email response with a name of person in charge of entire state. 

5. TN Dept. of Health CMV site: none

6. TN OSHA:

https://www.tn.gov/workforce/section/tosha

7. Rebekah McGill, MA, CCC-SLP, speech-language pathologist and CMV awareness advocate, rebekahmcgill.rm@gmail.com

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 take? 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 free pdf with its color images and comments by a therapist on grief 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, however, because of funds, so it is still on my wish list for Christmases yet to come. 

So, I must continue in my quest, begun in my misadventure travel memoir, Mystic Seafarer's Trail, to become thin and famous so people will listen to me! 

After presenting the story of Elizabeth's life at the first international Congenital CMV conference held in the U.S, at the Centers for Disease Control and Prevention (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. Thankfully, there is a large army of CMV parents and medical professionals doing the same thing (see CMV organizations  and legislation below). 

As a storyteller, I found the following ways to share a CMV prevention message: 

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

Santa, below my signature are ways you and your helpers can learn more about congenital CMV and how to stop it. 

Merry Christmas and “God bless us, everyone!”

Sincerely,

Lisa Saunders

Advocate for CMV awareness and policy

Parent representative, Congenital Cytomegalovirus Foundation

Facebook: Congenital CMV News

Congenital CMV Blog 
LisaSaunders42@gmail.com
PO Box, 389, Mystic, CT 06355

U.S. LEGISLATION

—In 2011, United States 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” and designated the month of June as National Congenital CMV Awareness Month.

——In 2015, Connecticut passed testing of newborns who fail their hearing screen, but not prevention education because of funds.

“In five states (Hawaii, Illinois, Tennessee, Texas, and Utah), laws regarding CMV awareness have been passed that require healthcare providers to discuss CMV with pregnant women, and in eight additional states, CMV legislation has been proposed or is in discussion.” (Cytomegalovirus: The Virus All Pregnant Women Should Know About Now by Gail Demmler-Harrison, MD (Dec. 2. 2016)

—

U.S. ORGANIZATIONS THAT WORK TO STOP CMV

Congenital CMV Disease Research, Clinic & Registry

Gail J Demmler-Harrison, MD, Professor, Pediatrics, Section Infectious Diseases, Baylor College of Medicine, Attending Physician, Infectious Diseases Service, Texas Children's Hospital, CMV Registry, CMV Research and CMV Clinic. The CMV Registry supports CMV research, disseminates information and provides parent support. Visit: https://www.bcm.edu/departments/pediatrics/sections-divisions-centers/cmvregistry. Dr. Demmler-Harrison’s Blog: http://www.texaschildrensblog.org/author/gdemmler/

Contact: 832-824-4330, gjdemmle@texaschildrens.org

National CMV Foundation 

“At the National CMV Foundation, we work to inform and educate others on specific prevention measures to protect against the risk of CMV infection.” They have a very good congenital cytomegalovirus Q. and A. at: https://www.nationalcmv.org/resources/faqs.aspx.  They have simple flyers for downloading at: https://www.nationalcmv.org/resources/educational-downloads.aspx. Sample flyer: 

 

Congenital Cytomegalovirus Foundation 

Lenore Pereira, Ph.D., Founder of Congenital Cytomegalovirus Foundation, and Professor, Cell and Tissue Biology Department, University of California San Francisco.  The Congenital CMV Foundation raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine. Excellent research papers available at: http://www.congenitalcmv.org/

Contact: lenore.pereira@ucsf.edu

National CMV Registry for Pregnant Women 

Stuart Adler, M.D., Professor Emeritus of Pediatrics and Professor of Microbiology and Immunology, Virginia Commonwealth University. He organized the National CMV Registry for Pregnant Women. Visit: http://www.cmvregistry.org/, contact: sadler@vcu.edu

PREVENTION RESOURCES FOR OTHER DISEASES

CDC: Read “Protect Your Unborn Baby or Newborn from Infections” to learn about preventing CMV infection as well as Group B Strep (GBS) disease, listeriosis, and Zika at: www.cdc.gov/features/prenatalinfections/

CONGENITAL CMV ORGANIZATIONS IN OTHER COUNTRIES INCLUDE:

Australia—Congenital CMV Association of Australia: http://cmvcanada.com
Canada—Canadian CMV Foundation: http://cmvcanada.com
United Kingdom—CMV Action: http://cmvaction.org.uk
Japan— TORCH Association Japan: http://toxo-cmv.org/; info@toxo-cmv.org; https://www.facebook.com/toxocmv/; (TORCH: Toxoplasmosis, Other infections, Rubella, Cytomegalovirus, and Herpes simplex virus, which can cause serious conditions in the fetus or newborn following maternal infection)

*(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.)

Lisa Saunders, CMV Awareness and Policy Advocate

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.

The following information was updated June 4, 2021. To download CMV resume, click here. 

Lisa Saunders is the mother of Elizabeth born severely disabled by congenital cytomegalovirus (CMV), the leading viral cause of birth defects, 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.

Updated June 4, 2021. To download CMV resume, click here. 

Lisa volunteers with the National CMV Foundation and other organizations that encourage a woman’s right to know how to protect her pregnancies congenital CMV, which disables approximately 4,000 newborns each year in the U.S. She tries to get laws passed to battle CMV and often asks the media to help raise awareness of CMV prevention. She says, “I am currently asking New York to expand its CMV law to require prevention education. I am also asking the public to share and perhaps sign my Declaration of Women's CMV Rights and Sentiments (inspired by the Women's Rights Declaration of Sentiments of 1848). Despite my work over the last 30 years, and the work of other families and doctors, a recent study concluded that 91% of women have never heard of congenital CMV (Doutre et. al, 2016).

Lisa’s CMV Awareness Efforts:

• In 2015, Connecticut became the second state in the U.S. to require CMV testing when an infant fails their hearing test.

• On May 22, 2019, OSHA announced in "QuickTakes," its newsletter on workplace safety and health: "A common virus, Cytomegalovirus (CMV) affects thousands of workers in childcare centers and healthcare facilities. These workers are at the greatest risk of exposure because the virus is often spread through saliva and other body fluids of young children. OSHA's new webpage on CMV [https://www.osha.gov/SLTC/cmv/], explains how to minimize health risks associated with workers' exposure to this virus."on workplace safety and health: "A common virus, Cytomegalovirus (CMV) affects thousands of workers in childcare centers and healthcare facilities. These workers are at the greatest risk of exposure because the virus is often spread through saliva and other body fluids of young children. OSHA's new webpage on CMV, explains how to minimize health risks associated with workers' exposure to this virus."

• The MotherToBaby.org Education Committee updated their CMV fact sheet to add a question specific to occupational exposure.

Lisa’s CMV work includes: 

• Lecturing on CMV prevention, legislation, and research. 

• Writing adult and children’s books on CMV prevention. 

• Interviewing health and wellness experts on  her local access TV talk show out of Baldwinsville, NY. See interview on PAC-B TV: "Did You Know? - CytoMegaloVirus (CMV) - What Moms Wished They Knew" (May 7, 2021)  

• Coordinate the planning and delivery of CMV information through press releases, newsletters, Facebook (Congenital CMV News); educational campaigns (workshops, public service announcements,”Had I Known (about CMV)”; health fairs and behavior change programs such as “Share a Meal, Not the Germs” and “Keep Your Cups to Yourself.” 

Education: Cornell University, Ithaca, NY: B.S. - Business Management and Marketing (1982).

Qualifications 

• Mother of a child who suffered from congenital CMV for 16 years (1989-2006). 

• Former licensed child care provider (1986-1993) unaware of increased risk for CMV.

• Commendations: Infection Control Nurses of Connecticut: Honored for “Unwavering dedication in her crusade to stop CMV (2013) and Cornell University President, Letter of appreciation for CMV work (2013)

• International author of books providing a CMV prevention message. 

CMV PRESENTATIONS 

New England Consortium on Deafblindness, online (Feb. 12, 2021)

Cytomegalovirus Awareness Day. Presentation: “An Inconvenient Truth: What Everyone Should Know.” Co-presented with Nellie Brown, MS, CIH, Director of Workplace Health & Safety Programs, Lead Programs Manager, Certified Industrial Hygienist, The Worker Institute,  ILR School, Cornell University. Contact Tracy Evans Luiselli, Ed.D., Director, New England Consortium on Deafblindness (NEC), tracy.luiselli@perkins.org

Early Hearing Detection and Intervention (EHDI) Annual Meeting, Kansas City, Missouri  (March 8-11, 2020) 

Presentation: “Early Identification of Children who are Deaf/Hard of Hearing Plus (D/HH Plus) Including those who are Deaf-Blind” Parent panel. Contact Tracy Evans Luiselli, Ed.D., Director, New England Consortium on Deafblindness (NEC), tracy.luiselli@perkins.org

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

Siemens Healthineers, Healthy Mother/Healthy Baby Thought Leadership Webinar (Sept.18, 2019

Presentation: “Understanding TORCH Infections from both a Clinical and Personal Perspective”.Co-presented with Pablo J. Sánchez, M.D.,Professor of Pediatrics, The Ohio State University – Nationwide Children’s Hospital, Divisions of Neonatal-Perinatal Medicine and Pediatric Infectious Diseases, Director, Clinical & Translational Research (Neonatology). www.siemens-healthineers.com/education/optimal-pregnancy-outcomes-proper-id-testing

Contact: Louise Loughran, Global Marketing Manager, Siemens Healthineers, Louise.loughran@siemens-healthineers.com

Charles R. Drew University of Medicine & 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 & 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 & 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:

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.  Mary Goodin, M. Ed., OTR, Ssagoodin@cs.com

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

1. Help Childcare Providers Fight CMV. A workbook for child care directors and policy makers (2018).

2. Anything But a Dog! The perfect pet for a girl with CMV. A memoir (Unlimited Publishing, 2008, Japan: Thousand Books, 2017) 

3. Surviving Loss: The Woodcutter’s Tale: Fairytale about losing a child plus moving forward (2013)

4. Once Upon a Placemat--A Table Setting Tale: Coloring Book and CMV Prevention Tool (2016). When Lisa can't remember how to set the table, her grandmother teaches her to listen to the silverware. How does Mr. Knife keep the dish from running away with the spoon? Why does Miss Cup insist she and the others get a bath before being shared? Book includes images for coloring, recipes, and germ prevention tips, especially against CMV, which is more widespread than Zika.

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

• "Give Grandma and Grandpa a Lift on the Erie Canal?"  Messing About in Boats, March 2021.

• "The Danger of Spreading CMV: How We Can Protect Our Children" (ChildCare Aware of America, June 2017).

• “Help Childcare Providers Fight CMV” (National CMV Foundation, 2018, March 5)

• CMV: The Virus Nobody Talks About. Siemens Healthcare Diagnostics, p. 41. (Fall 2010).

• 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. (Summer 2006).

• Elizabeth: A Christmas Blessing. Challenge Magazine, 2(4), pp. 14, 16. (1994).

Flyers

• Above-sink wall flyer, "Share a Meal Not the Germs" (Children can color-in a black and white version of Share a Meal Not the Germs)

• Above-sink wall flyer, "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 (2018). 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

 

ARTICLES & TV INTERVIEWS THAT INCLUDE MY COMMENTS OR CMV WORK

 

• Spectrum News, "Couple pushes for law in memory of their daughter" Jessica Houghtaling (Jul. 01, 2021). Includes interview with Dr. Sunil Sood and is airing across the Capital region, Hudson Valley, Rochester, Buffalo, North Country and Southern Tier.
• Finger Lakes Times, "Trail of Hope celebration in Lyons marks CMV Month in New York", Steve Buchiere (Jun 11, 2021).
• Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV" by STEVE BUCHIERE, (June 4, 2021).

• Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV" by STEVE BUCHIERE, (June 4, 2021).

• The Citizen:  "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness," by Robert Harding (June 2, 2121). 

• Syracuse Woman magazine, "Fighting CMV One Step at a Time (p.28)" by Emma Vallelunga (May 2021) (p.29 image of Stop CMV hand, rock and shirt)

• The Citizen: "'Elizabeth's law,' named for CNY couple's daughter, would boost CMV awareness" by Robert Harding (May 4,2021)

• The Citizen, "Challenge for Change: Walking across NY to raise awareness of CMV," by David Wilcox (Mar 31, 2021)

• National CMV Awareness Month: Lisa was featured along with musician, Debra Lynn Alt, and pediatrician Brenda K. Balch, M.D., on News 8's: “Mystic mother raises awareness of CMV, a risk for pregnant women and their babies,”2018) 

• Simsbury Community Television, Inc., Daughters of the American Revolution, The Abigail Phelps Chapter presents: Congenital Cytomegalovirus with guest Lisa Saunders, award winning author, talk show host (May 25, 2017).

• 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 my daughter's life with congenital CMV are 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”

 

PROFESSIONAL EXPERIENCE

INDEPENDENT WRITING/MARKETING CONSULTANT, Nov. 2010 – Present

• Content Coordinator, Groton-Mystic Neighbors magazine (Best Version Media publication), since March 2018-October 2019. 

• New England/New York media and networking consultant.  Write press releases, biographies, and marketing materials for clients that include:

• National Field Service Corporation 

• New England Consortium on Deafblindness

• Connie Howard Music. 

MYSTIC SEAPORT, Mystic, CT, 2010 – 2019 (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. 

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.  (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; State Representative, John Hampton; Dr. Brenda K. Balch, American Academy of Pediatrics Early Hearing Detection and Intervention Chapter Champion; Lt. Governor Nancy Wyman; Lisa Saunders, parent rep, Congenital Cytomegalovirus Foundation, holding picture of daughter Elizabeth; Kevin Ryan, State Representative; Governor Dannel P. Malloy; Cathy Osten, 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.

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.

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.

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! 

###

ADDITIONAL IMAGES, ETC: Since Elizabeth's birth, and later death, I have written four 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)

Contact Lisa Saunders

PO Box 389,  Mystic, CT 06355, LisaSaunders42@gmail.com

http://www.authorlisasaunders.com/

https://www.facebook.com/congenitalcmvnews/

 http://congenitalcmv.blogspot.com/

Types of Organizations Lisa collaborates with: click here