Wednesday, November 10, 2021

Japan Launches Children's Book by NY Author to Stop CMV Birth Defects

 

  "Riley and Elizabeth" by Lisa Saunders. Illustrated by Uyo Takayama. English -Japanese book translator, Sayaka Nakai. (Book cover image provided by Thousands of Books, Inc.)


Japan Launches Children's Book by NY Author to Stop Birth Defects

"Riley and Elizabeth," about an old rescue dog and his quadriplegic girl, raises awareness of disabilities caused by cytomegalovirus (CMV)


Baldwinsville, New York--Author Lisa Saunders collaborated with TORCH Association Japan to create the family-friendly picture book, "Riley and Elizabeth" (Thousands of Books, Inc., November 2021). Based on the true story of Lisa's daughter and her dog, the goal of TORCH Association Japan is to place the book in doctor's offices and hospitals so the public can learn how to prevent birth defects caused by TORCH infections (TORCH stands for: Toxoplasmosis, Other infections, Rubella, Cytomegalovirus, and Herpes simplex virus). Japanese citizens and a number of practicing doctors raised funds to produce and distribute the book.

Tomomi Watanabe, founder of TORCH Association Japan, thought that an appealing, illustrated book about a girl and her dog would make it easier for the general public to pick up while waiting to be seen by doctors. Tomomi wants everyone to know how to prevent infections that cause birth defects. She stated, "All Japanese people know that tobacco and alcohol have an adverse effect on the fetus. In order to bring mother-to-child infection transmission to the same level, I think it is necessary to educate the public long before they become pregnant so prevention becomes a life-long habit."

Wanting to sow seeds of interest in birth defect prevention in a creative way, Tomomi thinks the artwork in "Riley and Elizabeth" will attract people who like animals and to read to children. The dog in the story doesn't tell the reader why the little girl is in a wheelchair, can't move her limbs, can't speak and goes to special education school. Tomomi wants people to wonder why the little girl is the way she is and hopes they will read the educational portion of the book.

Sayaka Nakai of Tokyo, the English -Japanese book translator with Thousand Books Project Team, edited Lisa Saunders's adult book, "Elizabeth and the Miracle Dog Riley" in a way to create a captivating tale for children, choosing to write it from the dog's perspective. Having spent her junior and high school days in New York City, Sayaka understands the heart of this American story and was able to relate it to a new audience--Japanese children and their families. Sayaka said, "I wanted the story of Elizabeth and Riley to live on, so I wrote the picture book."

Lisa Saunders said, "My grandchildren are big fans of Japanese stories, and my granddaughter Elizabeth (named in memory of my daughter), named my fish after a Japanese character, so I am thrilled to share our story with a Japanese audience. I thought it was so clever of Sayaka Nakai to tell the story of my daughter Elizabeth from her dog's perspective. She started it with: 'I'm Riley. This is my favorite Elizabeth. This is the story of me, Elizabeth, and my dad, mom, and Jackie.'"

Lisa hopes the Japanese publisher will create an English version of "Riley and Elizabeth" so the English-speaking public will learn more about cytomegalovirus (CMV) and Toxoplasmosis from Elizabeth's old rescue dog. She says, "The charming illustrations truly capture the spirit of Elizabeth and Riley--and the rest of our family!"

Illustrator Uyo Takayama, born in Tokyo, has won several awards, including the Best of Best Award at the 2021 Brightness Illustration Competition. "While I was drawing 'Riley and Elizabeth,' I felt like Riley was there for me. I wanted to make this picture book something that people can enjoy for a long time."

Lisa is currently asking New York residents to write to their assembly members asking them to support "Elizabeth's Law," named in memory of her daughter, so that women will be educated on how to prevent CMV. Click to read the Memo of Support: "Elizabeth's Law"--A7560 (Rosenthal. L.) / S6287A (Mannion, J.).

To learn more about CMV, Toxoplasmosis, and other infections, visit: https://www.cdc.gov/pregnancy/infections.html

To learn more about Riley and Elizabeth, visit: http://thousandsofbooks.jp/project/elizabeth/. To see the first few pages of the picture book: https://hanmoto9.tameshiyo.me/9784909125323.


Saunders shared her thoughts with the creators of Riley and Elizabeth for the publisher’s book launch party in November 2021 in the following video: https://drive.google.com/file/d/1JR9_Xwvte8jB9MM5YNOeod05HpL4DhF4/view?usp=sharing

If you do not speak Japanese and want to reach the Japanese publisher about the book, contact:

Atsushi Hori, The English Agency (Japan) Ltd., JAPAN, atsushi.hori@eaj.co.jp

Thursday, October 14, 2021

Memo of Support: “Elizabeth’s Law”--A7560 (Rosenthal. L.) / S6287A (Mannion, J.)




My husband and I are walking 360 miles across the State of New York to raise awareness of the little-known, yet leading viral cause of birth defects, congenital cytomegalovirus (CMV). You can watch the one-minute video of our Erie Canalway Challenge quest by clicking here.

If you feel inspired to protect unborn children from CMV, please contact your Assembly member and share my following "Memo of Support" (click here to download), or create your own.


Memo of Support
"Elizabeth's Law"
A7560 (Rosenthal. L.) / S6287A (Mannion, J.)

"Named in memory of our daughter, Elizabeth Saunders, the bill requires education to prevent the #1 birth defects virus" says Lisa Saunders of Baldwinsville, New York.

TITLE: AN ACT to amend the social services law, in relation to requiring child care providers to be trained on the impacts and dangers of congenital cytomegalovirus infection and the treatments and methods of prevention of cytomegalovirus infection; and to amend the public health law, in relation to requiring certain physicians to distribute informational materials concerning cytomegalovirus.

PROBLEM: Congenital Cytomegalovirus (cCMV) is acquired in utero and can result in serious birth defects in the baby. cCMV is the most common congenital (present from birth) infection in the U.S. About 1 in every 200 babies is born with a cCMV infection. Of these babies, around 1 in 5 will have long-term health problems i such as hearing and vision loss, microcephaly (small head), developmental and motor delays, and seizures (CDC).ii

  • In New York, every year an estimated 222 babies are born permanently disabled by cCMV iii

  • “CMV can be spread by contact with an infected child’s urine or other body fluids. Pregnant women who work with young children, such as day care workers or health care workers, should take steps to prevent infection...(American College of Obstetricians and Gynecologists (ACOG)).

  • “Pregnant women with young children at home also are at risk and should take these steps”(ACOG)).iv

  • “Nearly half of women have been infected with CMV before their first pregnancy. Of women who have never had a CMV infection, it is estimated that 1 to 4% of them will be infected during pregnancy.”v

  • OSHA recognizes CMV as a “hazard” for childcare workersvi and the American Academy of Pediatrics (AAP) states, “With regard to child-to-staff transmission, studies have shown increased rates of infection with CMV in caregivers/teachers ranging from 8% to 20%.”vii

  • Women who have young children in group child care are at an increased risk for CMV.viii 

  • Racial and ethnic minorities are at higher risk for CMV.ix

  • “The risk of CMV infection in hospital workers is not greater than it is in others in the community and is probably low because of careful hand washing practices. In daycare centers, where hand washing practices may not be as good, there may be a greater risk of infection.”x

  • cCMV is largely preventable, but 91% of women do not know about the disease or prevention.xi 

SOLUTION: “You may be able to lessen your risk of getting CMV by reducing contact with saliva and urine from babies and young children. The saliva and urine of children with CMV have high amounts of the virus. You can avoid getting a child’s saliva in your mouth by, for example, not sharing food, utensils, or cups with a child. Also, you should wash your hands after changing diapers.”xii

SUPPORT A7560 / S6287A, “Elizabeth’s Law” 

Dr. Howard A. Zuckers, New York State Commissioner of Health, stated, "it is imperative that we give women of reproductive age the information they need to make informed decisions for themselves and their families.”xiii To learn more, contact me, Lisa Saunders of NY Stop CMV, at LisaSaunders42@gmail.com.

Supporters of cCMV prevention: CDC, OSHA, AAP, ACOG and NY Commissioner of Health. The NY Senate/Assembly proclaimed June 2021 Cytomegalovirus Awareness Month. Utah and Idaho have cCMV legislation accompanied by ongoing funding. The NY Senate passed “Elizabeth’s Law” in 2021.


 REFERENCES


i https://www.cdc.gov/cmv/awareness-month.html

ii https://www.cdc.gov/cmv/congenital-infection.html

iii In 2019, 221,539 babies were born in NY, with an estimated 1,108 born with cCMV. Using CDC’s averages, 222 of those babies were born permanently disabled from cCMV.

iv https://www.acog.org/womens-health/faqs/reducing-risks-of-birth-defects

v https://www.cdc.gov/cmv/clinical/overview.html

vi https://www.osha.gov/cytomegalovirus/hazards

vii https://nrckids.org/CFOC/Database/7.7.1.1

viii https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046747/

ix https://pubmed.ncbi.nlm.nih.gov/29784513/

x https://www.health.ny.gov/diseases/communicable/cytomegalovirus/fact_sheet.htm

xi https://digitalcommons.usu.edu/jehdi/vol1/iss2/6/

xii https://www.cdc.gov/cmv/fact-sheets/parents-pregnant-women.html

xiii https://health.ny.gov/commissioner/letters/docs/2018-08.pdf


 Link to Memo of Support by Lisa Saunders of NY Stop CMV:https://docs.google.com/document/d/15tObX8Vkj-fVUY56Tv-cOJbtSftLw2UK8FgsmkTViZM/edit?usp=sharing

###


New York Media Coverage



  1. Spectrum News, "Couple pushes for law in memory of their daughter" Jessica Houghtaling, Jul. 01, 2021. Includes interview with Dr. Sunil Sood.

  2. Finger Lakes Times, "Trail of Hope celebration in Lyons marks CMV Month in New York", Steve Buchiere (Jun 11, 2021).

  3. Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV", Steve Buchiere (June 4, 2021).

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

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

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

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

  8. Cornell Alumni Magazine: "In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action," Alexandra Bond (Sept/Oct 2015).

  9. Times Herald Record: What every pregnant woman needs to know, Deborah J. Botti

ABOUT LISA SAUNDERS
Lisa Saunders resides in Baldwinsville, New York, with her husband James P. Saunders, a recently retired Pfizer scientist.  Lisa is a founding member of  the New York Stop CMV Project and volunteers with the National CMV Foundation. In 2015, she 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.

Lisa was 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.

To download her CMV resume, click here

Tuesday, September 14, 2021

NY Moms/Doctors/Legislators Help Stop CMV, #1 birth defects virus. Want to join us?

Lisa Saunders on the 360-mile Erie Canalway Trail in Kirkville, NY, in 2021. Lisa and Jim Saunders plan to walk the entire Trail across upstate New York, leaving #Stop CMV rocks along the way to help prevent #1 birth defects virus. 77 miles walked so far (Photo by Jim Saunders).

Moms and doctors work to ensure women know how to prevent the leading viral cause of birth defects, cytomegalovirus (CMV). 

Want to join us?

Baldwinsville, NY--I was the mother of Elizabeth Saunders, born with a severely damaged brain from congenital cytomegalovirus (CMV) in 1989. She had cerebral palsy, developmental delays, epilepsy, and vision and hearing loss. She died in 2006 during a seizure. When I was pregnant with Elizabeth, I ran a licensed child care center in my home, volunteered in our church nursery, and cared for a toddler of my own--all activities that put my pregnancy at risk for cytomegalovirus (CMV), the leading viral cause of birth defects (cdc.gov​​​). 

Women who have or work with young children are at greater risk for CMV because the otherwise healthy toddlers in their care are often excreting the virus--especially those in group care.  When my husband Jim, now a retired Pfizer scientist, and I were living in Connecticut, we helped the state become the second, after Utah, to pass a CMV testing law in 2015. Having moved back to New York in 2019, we were glad to learn the state passed a CMV testing law in 2018 (Bill A587C​), but know more needs to be done in regard to prevention education.

CMV is “'a virus that has a PR problem. It’s the most common congenital infection in every population, happening in 1 out of every 150 babies, yet most pregnant women don’t know about it,'' said Dr. Sallie Permar, Chair, Department of Pediatrics, Weill Cornell Medicine, and pediatrician-in-chief, New York-Presbyterian Komansky Children’s Hospital. "'It’s a virus we have recognized for over 60 years as the cause of birth defects and brain damage in infants...'" (Weill Cornell Medicine, 2021). 

Angela Cote of Buffalo appreciates the 2018 New York CMV testing law because it helped doctors diagnose why her daughter Elise failed her hearing test giving her options for early intervention. But  Angela wishes she had known about CMV and how to prevent it before her pregnancy with Elise--especially since Angela had an occupational risk for it. She said, "Not once have I ever heard of CMV or was told about CMV. I was a nanny so I was around children a lot as well as having my daughter, who was a toddler at the time I became pregnant with Elise. Not my OB or any other doctor mentioned or screened me for CMV to see if I had been exposed in the past."

“This is a very common virus, but it remains somewhat under the radar. A woman can unknowingly acquire it during pregnancy, and pass the infection to the unborn baby,” states Sunil K. Sood, M.D., Chair of Pediatrics, South Shore University Hospital, Attending Physician, Infectious Diseases, Cohen Children's Medical Center and Professor, Zucker School of Medicine at Hofstra/Northwell. "CMV is spread from person to person through body fluids. Day care workers, nurses, mothers of young children, and others who work with young children are at greatest risk of exposure to CMV. Since young children commonly carry CMV, pregnant women and women planning pregnancies should take extra care to avoid urine and saliva from young children” (NYMetroParents, 2016).

CMV prevention tips ​from the Centers for Disease Control and Prevention (CDC) state:  "The saliva and urine of children with CMV have high amounts of the virus. You can avoid getting a child’s saliva in your mouth by, for example, not sharing food, utensils, or cups with a child. Also, you should wash your hands after changing diapers" (https://www.cdc.gov/cmv/fact-s...)​

According to the CDC, about 1 in every 200 babies is born with a cCMV infection in the U.S. Of these babies, around 1 in 5 will have long-term health problems (cdc.gov/cmv). Approximately 4,000 babies are born disabled by congenital CMV in the U.S. each year. In 2019, in New York, 221,539 babies were born. Therefore, an estimated 1,108 babies were born with congenital CMV, with 222 babies being born permanently disabled by congenital CMV.  

Racial and ethnic minorities are particularly at risk for CMV:  "Significant racial and ethnic differences exist in the prevalence of cCMV [congenital CMV], even after adjusting for socioeconomic status and maternal age" (Fowler et al., 2018). 

In 2021, the State of New York Senate hoped to helped raise awareness of CMV by passing Senate Bill S6287A, which  "Establishes 'Elizabeth's law'; requires child care providers to be trained on the impacts and dangers of congenital cytomegalovirus infection and the treatments and methods of prevention of cytomegalovirus infection; requires distribution of materials relating to cytomegalovirus by certain physicians." The NY Assembly still needs to pass their version of the bill (A7560). 

Brandi Hurtubise of Buffalo supports "Elizabeth's Law." Her second child Samantha was born with congenital CMV. Brandi told her story to the National CMV Foundation​: "No one told me I shouldn't share drinks or food with my toddler while I was pregnant with [Samantha]. Or that I needed to wash my hands after every single diaper change. That I needed to be cautious of his saliva and urine because it could be carrying a virus that would harm my unborn baby. I didn't know because CMV isn't commonly talked about or educated on; even though it is incredibly common."

Edel Law of Tappan said, "This bill is important to me because my three-year-old daughter has congenital CMV. It came as a total shock when at 31 weeks pregnant, I found out she had abnormal brain development. Upon further testing, we found out I had contracted and passed CMV onto my daughter. After learning about CMV, it was not shocking that I contracted the virus since I had a toddler in preschool and was an early childhood educator. My daughter has developmental delays, single sided deafness, wears a cochlear implant, and has a form of heart failure."

New York proclaimed June 2021 as Cytomegalovirus Awareness Month (Assembly Resolution No. 346​). To kick it off, Trail Works, Inc., hosted an event at its Trail of Hope in Lyons on June 5.  A co-sponsor of the Proclamation, Assemblyman Brian Manktelow, reading the entire Proclamation aloud, including the statement: "It is imperative that women are educated  about  the  virus itself  and  simple preventative measures, such as not sharing food with toddlers, and washing one's hands after changing  infants  and  toddlers diapers..." The reading concluded with  220 rocks painted silver (the official color of CMV awareness) placed on the Trail to honor the number of babies born disabled by congenital CMV in New York each year. Kristin Schuster of Canandaigua, mother of Autumn born in 2015 with congenital CMV, painted many of these rocks and, per requests from families unable to attend, wrote the names of 70 children born disabled by CMV on the rocks. Her daughter Autumn tried to help us place the silver rocks on Trail. Jessica Keukelaar of Macedon was in attendance with her first born daughter, Kyleigh, born with congenital CMV in 2018. Like Kristin and myself, Jessica worked professionally with young children during her pregnancy unaware of her occupational risk for CMV. Tabitha Rodenhaus of Buffalo, the mother of a child with congenital CMV, painted #StopCMV rocks for inclusion on the Trail of Hope (watch music video of the event: "Had I Known, Lyrics and Music by Debra Lynn Alt," produced by Mark De Cracker, June 2021)​. 

Jim and I continue to place the #Stop CMV rocks along the 360-mile Erie Canalway Trail as we walk across upstate New York trying to raise awareness.  

To learn more about protecting pregnancies from CMV, visit the CDC at: www.cdc.gov/cmv and the National CMV Foundation. If you would like to join the effort to help all women of childbearing age in New York learn CMV prevention, please write to me at LisaSaunders42@gmail.com or visit: Congenitalcmv.blogspot.com or Facebook: NY Stop CMV Project. Educational resources below my bio.

###

My Bio:

Lisa Saunders resides in Baldwinsville, New York, with her husband James P. Saunders, a recently retired Pfizer scientist. Lisa is a founding member of the NY Stop CMV Project and volunteers with the National CMV Foundation. In 2015, she was instrumental in helping Connecticut become the second state in the U.S. to require CMV testing for newborns who fail their hearing screen. A graduate of Cornell University, Lisa is a public speaker, a talk show host for  PAC-B TV and an award-winning writer. She is the author of several books, including some with a CMV prevention message for children and adults. Lisa and her husband Jim are walking the 360-mile Erie Canalway Trail across upstate New York in hopes of drawing attention to CMV prevention. (Watch Lisa and Jim on Spectrum News: "Couple pushes for law in memory of their daughter" by Jessica Houghtaling, Jul. 01, 2021. 

FLIERS/POSTERS

PRESENTATIONS

  • For Caregivers/Teachers/Educators: "CMV Training Module Video" (This work was supported by the AUCD and the LEND Pediatric Audiology Program made possible through a Cooperative Agreement with the Health Resources and Services Material Child Health Bureau (MCHB) grant awarded to the University of Connecticut
  • For Employers: Publication: Brown, N. J. (2019, November). Occupational exposure to cytomegalovirus (CMV): Preventing exposure in child care and educational settings, including OSHA advisories. Ithaca, NY: Cornell University, ILR School. (Available from: https://digitalcommons.ilr.cornell.edu/conference/45/); VimeoDownload video workshop. This publication/presentation is by Nellie Brown, MS, CIH, Certified Industrial Hygienist, and Director, Workplace Health and Safety Program, Cornell University – ILR School. The information in this training program was originally developed for The Center for Occupational & Environmental Medicine at the Erie County Medical Center (ECMC). Permission to make this training program available online granted by The Center for Occupational & Environmental Medicine. For further information, or to ask about a Q and A over Zoom, contact Nellie Brown at: njb7@cornell.edu.

Notes: 

The following six reasons explain why CMV has a "PR problem" 

  • 1) CMV prevention education is not "part of standard prenatal care” (Washington Post, "How a common, often harmless virus called cytomegalovirus can damage a fetus," May 15, 2021.)
  • 2) Doctors don’t want to frighten, worry or “burden” patients. New York Times: "The American College of Obstetricians and Gynecologists [ACOG] used to encourage counseling for pregnant women on how to avoid CMV. But [ in 2015], the college reversed course...Guidelines from ACOG suggest that pregnant women will find CMV prevention 'impractical and burdensome,' especially if they are told not to kiss their toddlers on the mouth — a possible route of transmission.” (Saint Louis, 2016).  
  • 3)"The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed” (Cannon and Davis, 2005). 
  • 4) Medical training downplays the dangers. Pediatrician Megan Pesch, M.D., of the University of Michigan’s C.S. Mott Children’s Hospital, whose third daughter was born with congenital CMV and a progressive hearing loss, said, "I went back and looked at my notes at what I’d learned in residency and medical school, and what we learned was so rudimentary and basic...I waver between feeling guilty and feeling furious. I have spent — how many years of my life in developmental pediatrics? — how could I not have known?”(Washington Post, "How a common, often harmless virus called cytomegalovirus can damage a fetus," May 15, 2021.) 
  • 5) Low media coverage. In the HealthNewsReview.org article, "Why does CMV get so much less news coverage than Zika — despite causing far more birth defects?"  the author states,  “Researchers we spoke with identified the same factors – fear and the epidemic/endemic nature of the diseases – as driving the media disparity” (Shipman, 2018). 
  • 6) Although U.S. workers have the right to “receive information and training about hazards” (Occupational Safety and Health Act of 1970), there are no federal laws governing CMV education policies for child care workers. The Department of Labor states, "Education and training requirements vary by setting, state, and employer." The Occupational Safety and Health Administration (OSHA) lists CMV as a "Recognized Hazard," yet recent surveys show that most child care providers do not know about CMV and many acknowledge using diaper wipes to clean hands instead of following proper protocols (Thackeray and Magnusson, 2016). Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014). 

Media Coverage

CMV LAW PASSED IN CT with LISA SAUNDERS