Tuesday, October 18, 2022

NY: Test ALL Newborns for Congenital Cytomegalovirus (CMV)--Must be done in first three weeks.

 


Elizabeth Saunders born with congenital cytomegalovirus (CMV) in 1989. Mother Lisa Saunders, a New York resident, asks the governor to sign "Elizabeth's Law" ( A7560B/S6287C).



Newborn Diagnosis of Congenital Cytomegalovirus (cCMV) 
is Critical for Effective Early Intervention

Moms, Doctors and Early Interventionists ask NY legislators to amend law 
to require ALL newborns be tested for CMV 


Baldwinsville, New York-- While waiting for the governor to sign "Elizabeth's Law" ( A7560B/S6287C), which requires information to be given to child care providers and women at their first prenatal visit about the dangers of congenital cytomegalovirus (cCMV) 
infection, moms, doctors and early interventionists, along with Assemblymember Linda B. Rosenthal, are seeking to amend Rosenthal's 2018 CMV law requiring newborns with a hearing impairment be tested for CMV, to requiring all newborns be tested for CMV (A10129). (In 2022, Minnesota became the first state to pass legislation requiring every newborn be screened for CMV.)  

According to the CDC, CMV is the leading viral cause of birth defects with one in 200 babies born with cCMV. Approximately 20% of babies born with cCMV will suffer long-term health problems such as hearing and vision loss, developmental delays and cerebral palsy. CMV "is a common virus that infects people of all ages. Most people infected with CMV show no signs or symptoms. When a baby is born with cytomegalovirus infection, it is called congenital CMV and may cause brain, liver, spleen, lung, and growth problems. The most common long-term issue is hearing loss, which may be present at birth or develop later in childhood (CDC, 2019). 

According to the CDC: "Hearing loss may progress from mild to severe during the first two years of life, which is a critical period for language learning. Over time, hearing loss can affect your child’s ability to develop communication, language, and social skills. Babies who show signs of congenital CMV disease can be treated with medicines called antivirals. Antivirals may decrease the severity of hearing loss" (https://www.cdc.gov/cmv/hearing-loss.html). 

Congenital CMV can also cause visual impairments, including strabismus, cortical visual impairment, nystagmus, and optic nerve atrophy" (Causes of Deaf-Blindness, National Center on Deaf-Blindness). 

Despite being more common than many of the diseases tested in New York's newborn screening process, cCMV is not one of the 50 different disorders screened. Newborn screening "refers to medical tests...performed to identify babies with certain disorders, which without intervention, may permanently impact newborns and their families" (New York State Newborn Screening Program, Department of Health, Wadsworth Center).

Children born with sympotmatic congenital CMV can be treated if diagnosed early. “Infants congenitally infected with CMV may benefit from antiviral therapy, especially if treatment is initiated within the first month of life,” states Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & Registry (www.uptodate.com/contents/congenital-cytomegalovirus-infection-management-and-outcome).

Kristin Schuster of Canandaigua, mom to Autumn (born 2015), said, "Unfortunately, my daughter wasn't diagnosed with congenital CMV until 18 months old--well after the opportunity had passed to receive treatment most effective when given between ages zero to six months. She was not diagnosed with congenital CMV at birth despite failing her newborn hearing screen multiple times, having 'low for gestational age' birth weight, and microcephaly.  Autumn received her first pair of hearing aids for bilateral severe hearing loss at 4 months old, glasses for vision impairment at 5 months, an MRI showing brain calcifications, very significant global delays, and received a g-tube for feeding at 15 months of age.  Up until then, all of the doctors and specialists we were seeing claimed that her diagnoses were 'unrelated.'  It wasn't until I read an article about CMV posted in a Facebook group for Rochester parents of children with hearing loss that I had that 'aha' moment that congenital CMV must be the root cause of all of my daughter's difficulties.  When I requested to have her tested for CMV, I was initially given pushback, but when I demanded her newborn blood spot be tested, her neurologist arranged to have it tested from where it was banked in Albany.  When the test came back, we finally had our confirmed diagnosis of congenital CMV--too late for her to receive treatment in the optimal first months of life."   

Susanne Morgan Morrow, MA, CI, CT, Project Director, New York Deaf-Blind Collaborative (NYDBC), said "It is critical that children with dual sensory loss be identified as early as possible for a myriad of reasons. Research shows that children with compromised hearing and vision require the most direct interventions in order to develop concepts and to have access to language that is in the most suitable modality to their experience. Families are often extremely overwhelmed with the knowledge of this new diagnosis and need to get connected to resources and experts who can provide appropriate assessments." 

"The majority of infants with cCMV are asymptomatic at birth, but 10%–15% will develop hearing loss" (Kabani and Ross, 2020). "Delayed-onset and progression of SNHL[Sensorineural Hearing Loss] among children with asymptomatic congenital cytomegalovirus infection continued to occur throughout adolescence. However, the risk of developing SNHL [Sensorineural Hearing Loss] after age 5 years among case-patients was not different than in uninfected children" (Lanzieri, T. et al., 2017). Because hearing loss due to cCMV often worsens or develops later in childhood, targeted CMV screening of infants who fail the newborn hearing screening fails to detect nearly half (43%) CMV cases (Fowler, K. et al., 2017). 

Jacqueline Augustine, President of Hands & Voices of NY, a non-profit for families with deaf and hard of hearing children, said, "Early screening and detection for CMV is essential to ensuring children and families are given the necessary resources, follow-up and medical interventions needed for their development. Many children go misdiagnosed. Parents also do not know that CMV is possible to be contracted in-utero. More education is also needed for parents prior to birth. Screening and early detection combined with prenatal CMV education is paramount."

"If an infant is known to have passed the newborn hearing screen but has tested positive for CMV, the most recent JCIH [Joint Committee on Infant Hearing] statement recommends a full pediatric audiology evaluation by 3 months of age and then future monitoring “every 12 months to age 3 or at shorter intervals based on parent/provider concerns," stated Brenda K. Balch, MD, American Academy of Pediatrics Early Hearing Detection & Intervention Connecticut Chapter Champion (https://successforkidswithhearingloss.com/wp-content/uploads/2020/02/CMV-An-Often-Unknown-Cause-of-Hearing-Loss.pdf). (See The Journal of Early Hearing Detection and Intervention 2019 recommendations: https://dhhs.ne.gov/EHDIEarly%20Hearing%20Detection%20and%20Intervention/JCIH%202019%20Risk%20Factors%20Table.pdf)

"'Most babies who are destined to have CMV-associated hearing loss will have normal hearing at birth,'" stated David W. Kimberlin, MD, professor of pediatrics, vice chair for clinical and translational research and co-director of the division of pediatric infectious diseases at the University of Alabama at Birmingham. "'If you have a targeted screening approach, and let’s say that you test every single baby who fails their hearing screening for congenital CMV, you’re still missing most of the babies who are going to go on to develop CMV-associated hearing loss" ("Experts make the case for universal CMV screening", 2019).

"We concluded that there is good evidence of potential benefit from nonpharmaceutical interventions for children with delayed hearing loss that occurs by 9 months of age. Similarly, we concluded that there is fair evidence of potential benefit from antiviral therapy for children with hearing loss at birth and from nonpharmaceutical interventions for children with delayed hearing loss occurring between 9 and 24 months of age and for children with CMV-related cognitive deficits...Overall, we estimated that in the United States, several thousand children with congenital CMV could benefit each year from newborn CMV screening, early detection, and interventions" ("Universal newborn screening for congenital CMV infection: what is the evidence of potential benefit?", Cannon et al., 2014).

According to Dr. Megan Pesch, "Babies with CMV who are caught early can access early treatment – which includes anything from anti-viral medication, to early intervention services, to long term hearing and vision monitoring. Since 90% of symptomatic babies are missed at birth, universal screening would help identify both symptomatic babies who may benefit from medication, and also asymptomatic babies who are at higher risk of hearing loss in childhood" (Recommended Uniform (Newborn) Screening Panel (RUSP) Update, National CMV Foundation, 2021). 

Kelly Smolar Gerne, mechanical engineer, Brooklyn (mother of Alexis, born 2020) says Alexis is thriving because she was diagnosed and treated early following a failed newborn hearing test. “While I am angry about the lack of CMV education prior and during my pregnancy, the CMV testing law passed in 2018 meant our family was the recipient of those who had fought before us. I want to continue that forward so all babies in the State of New York will have the option for early intervention."  


Angela Cote of Buffalo appreciates the 2018 CMV law because it led to the quick diagnosis of why Elise, born in 2019, failed her newborn hearing test, giving her access to early intervention, but Angela wishes she had known about CMV before her pregnancy.  She told Lisa Saunders in a public access TV interview how shocked she was by the diagnosis. She couldn’t believe she had never heard of CMV, especially since she was surrounded by young children as a nanny and the mother of a toddler  ("CytoMegaloVirus (CMV) - What Moms Wished They Knew," PAC-B TV, 2021).


Brandi Hurtubise of Buffalo,
New York National CMV Foundation Alliance Chair, told the National CMV Foundation on Facebook about her second child Samantha, born in  2016 with congenital CMV.  "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." (Brandi can be reached at nationalcmvny@gmail.com or visit: nationalcmv.org).


New York residents who would like to get involved in the effort to see all newborns screened for CMV can contact Assemblymember Rosentha's office at: 518.455.5802 or Nick Guile, Legislative Director for Assemblymember Linda B. Rosenthal, at guilen@nyassembly.gov. 


###


Additional information:

To review the case for Universal CMV Screening, which includes a Q. and A., such as who pays for the test, visit: CMVmass.org/screen/

The National CMV Foundation states, "More children live with disabilities due to congenital CMV than other well-known infections and syndromes, including: Down syndrome, fetal alcohol syndrome, spina bifida, pediatric HIV/AIDS, toxoplasmosis, and Zika – yet less than ten percent of women know about CMV." The non-profit organization recommends that "congenital CMV to be added to the Recommended Uniform Screening Panel (RUSP), national recommendations that guide and support states in the development of their newborn screening programs. Screening every child for CMV at birth opens the door for early intervention, therapeutic support, the very best developmental outcomes possible" (Nominate congenital cytomegalovirus (CMV) for uniform newborn screening, 2019). 


Marcia Fort, AuD, CCC-A, representing the Board of Directors of the Directors of Speech and Hearing Programs in State Health and Welfare Agencies (DSHPSHWA), wrote a letter to the Advisory Committee on Heritable Disorders in Newborns and Children in support of nominating congenital CMV infection for consideration by the Committee for the RUSP: "Failure to diagnose the cCMV infection can lead to a delayed diagnosis of hearing loss, impacting the child's language development and educational progression"  (National CMV Foundation, "Nominate congenital cytomegalovirus (CMV) for uniform newborn screening", 2019,  Application). 


William C. Gruber, M.D., FAAP, FIDSA, Senior Vice President of Pfizer Vaccine Clinical Research and Development, also wrote a letter to the Advisory Committee on Heritable Disorders in Newborns and Children in support of nominating congenital CMV infection for RUSP. He stated, "In the absence of a vaccine to prevent the disease, prompt diagnosis and valganciclovir treatment of symptomatic congenital CMV infection  has been associated with improved audiologic outcomes and neurodevelopmental outcomes; prompt diagnosis would facilitate early identification of hearing loss so that other interventions could also be applied early to facilitate hearing and child development. In addition, routine screening would better identify the burden of the disease that could be prevented by a vaccine, facilitating vaccine development and recommendations"  (p.279,  Application). 

Dr. Roy D. Baynes of Merck wrote in his letter of support for congenital CMV infection for review as part of RUSP: "Beyond hearing loss which can sometimes appear years after birth, other health problems can include vision loss, intellectual disability, seizure, and more...Evidence suggests that newborn screening is cost-effective under a wide set of assumptions and universal screening offers a larger savings opportunity and the opportunity to direct care"  (p.266, Application).

Saturday, August 13, 2022

Gail J. Demmler-Harrison, MD, Winner of Prestigious 2022 Master Clinician Award, Working Over 30 Years to Prevent and Treat the Leading Viral Cause of Birth Defects, Cytomegalovirus

 


by Lisa Saunders


(Photo caption, l to r):  Lisa Saunders, former licensed childcare provider and founding member of New York Stop CMV Project; and Gail J. Demmler-Harrison MD, Attending Physician, Infectious Diseases at Texas Children's Hospital and Professor, Department of Pediatrics, Infectious Disease Section, Baylor College of Medicine (Congenital CMV Public Health & Policy Conference, Austin, TX ,September 2016).


Gail J. Demmler-Harrison, MD, Professor, Department of Pediatrics and Pathology and Immunology, Baylor College of Medicine, winner of the 2022 Master Clinician Award, is a pediatric infectious disease specialist who has been advocating for prevention of cytomegalovirus (CMV) throughout her entire medical career. An Attending Physician in Infectious Diseases at Texas Children's Hospital, she states that not providing CMV counseling is "a missed opportunity to save a baby from the devastating effects of CMV, including death in the womb and permanent disabilities'"(New York Times, Saint Louis, 2016).

According to the CDC, congenital CMV is acquired in utero and can result in serious birth defects in the baby. About 1 in every 200 babies is born with a congenital CMV infection. Of these babies, around 1 in 5 will have long-term health problems such as hearing and vision loss, microcephaly (small head), developmental and motor delays, and seizures.

I am the mother of Elizabeth. She was born with a severely damaged brain from congenital cytomegalovirus (CMV) in 1989. At the time of my pregnancy, I was a professional child care provider, church nursery volunteer, and mother of a toddler--all situations that put me at higher risk for CMV, yet I never heard of it. Toddlers, especially those in group care, are often excreting the virus in their saliva and urine.

Dr. Demmler Harrison states, “Approximately 1-4% of all pregnant women will experience a primary CMV infection during their pregnancy. If you work in a child care setting, the risk increases to approximately 10%. If you have a toddler at home who is actively infected with CMV and shedding CMV in their saliva or urine, the risk is even higher, approaching 50% in some studies" (CMV in Pregnancy: What Should I Know, Texas Children's Hospital).

Dr. Demmler-Harrison, or Dr. Gail (the name she encourages us CMV parents to use), makes time for moms like me looking to learn more about treating or preventing congenital CMV. I first contacted her in 2006 after Elizabeth died during a seizure. I had had a tormenting dream about young parents still being unaware of CMV until it was too late to help their baby. When I looked online to see what was being done about CMV, I ran across the National Congenital CMV Disease Research Clinic and Registry, of which Dr. Gail is the spearhead. I contacted the Registry and asked if I could join forces with them even though Elizabeth had passed away. Dr. Gail not only welcomed me into the Registry, but for the last 16 years has answered my questions about CMV so I can write books and articles on it and seek legislation requiring testing and education. When I try to get media coverage about CMV, she makes herself available as an expert resource. Dr. Gail told one reporter why she keeps at her decades-long attempt to raise CMV awareness: “’I knew this was my mission’” (What every pregnant woman needs to know, Times Herald Record, 2009). Dr. Gail has even helped me produce videos by reviewing my content: Erie Canal Trail: Stop Cytomegalovirus (CMV) Birth Defects. Pass "Elizabeth's Law" - A7560/ S6287A.

Dr. Gail states, “CMV is the most common virus that most people have never heard of. And I want to change that. I can’t change that CMV is a common virus, but I think I can change people’s knowledge-awareness about it. I have been studying CMV for over 30 years now and I’ve been profoundly affected by my patients and their families. So that is why I started [with] CMV and that’s why I’m staying with it…I want people to be aware of CMV. I don’t want to scare them. I don’t want to alarm them. I just want them to be aware—to have their eyes open so they can be mindful and thoughtful about what they can do to protect their family and their unborn child. As one pregnant woman told me, when she had a baby born with CMV, she said, ‘Why did those who came before me, not warn me?’...she looks you in the eye and says, ‘If I’d only known, I would have done something-- I would have done those simple precautions, but nobody told me.’ CMV—it’s public enemy number one for me...” (CMV Ends With Me - Dr. Demmler-Harrison, National CMV Foundation, 2017).

Sometimes, mothers contact me with medical questions about CMV, but since I'm not a doctor, I refer them to Dr. Gail. I feel so good knowing she answers their questions and points them in the right direction. When I've tried to get CMV laws passed in the states I've lived in (most recently, Connecticut and New York), she wrote “Letters of Support” to my legislators to prove to them that CMV is real and that only education can prevent it. In her letter written to New York legislators in 2022, she concluded: "When mothers and fathers sit across from me in my CMV clinic holding their little baby and ask, 'Why weren't we warned about CMV,' it's heart-breaking. All I can say is, 'I don’t know, I’ve been trying for over 30 years to educate pregnant women about CMV'” (Letter from Gail J. Demmler-Harrison MD).

Despite the difficulties raising awareness of CMV, the often "silent" but deadly virus, Dr. Gail won't rest until ALL women know how to protect their pregnancies. She does whatever she can to shout a CMV warning from the rooftops--and even sports a personalized "CMV DOC" license plate on her car. 



When asked why she chose to focus her medical career on CMV, she responded, “I was drawn to CMV, not because it’s easy, but because it’s hard. When I was a postdoctoral fellow, my mentor, Dr. Martha Yaw approached me...she put her arm around me and said, ‘I’d like you to be my post-doctoral fellow... looking at congenital CMV in pregnant women, and the long-term outcomes in their babies.’…So I slept on it... And said, ‘Yes. I like viruses. I like solving problems. This is going to be hard. And yes, I’ll do it.’ And that’s sort of the door that was opened for me. That I walked through, and I never left” (Interview, The Hou to Guide, 2020).

Dr. Gail has let me interview her several times in videos. In a video shot at the 2016 Congenital Cytomegalovirus Public Health & Policy Conference in Austin, Texas, I included an interview with one of her former patients, Caroline Bailey, a congenital CMV survivor and 26-year-old Master's college student at the time. She thanked Dr. Demmler-Harrion for the groundbreaking treatment she received just after birth and ended her story with what her life is like now--and with a very good question: "I am profoundly deaf, I have a cochlear implant and a hearing aid. But, I like to think I do pretty well in the world--I don't think I need much more than that. But, you know, it is surprising to me that more than 25 years after I was born that so many babies are still being infected with congenital CMV...It should be really just as well known as the Zika virus because the Zika virus and congenital CMV do many of the same things" (The Lisa Saunders Show: Cytomegalovirus (CMV)' (SEC-TV, 2017).

When Dr. Gail visited my public access TV studio in Connecticut, we both watched Debra Lynn Alt, Singer/Songwriter, perform her song,
 "Had I Knows (about CMV)"that captures how mothers feel when their child is born disabled by congenital CMV. It also captures what Dr. Gail has heard from mothers her entire medical career (The Lisa Saunders Show: CMV, 2018).

To learn more about Gail J. Demmler-Harrison, MD, visit :https://www.bcm.edu/people-search/gail-harrison-demmler-22821.

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Notes:

About Dr. Demmler-Harrison's 2022 Master Clinician Award From Baylor College of Medicine - Links to images from the Faculty Awards Day ceremony on May 19, 2022, the full list of award winners and the photo gallery of recipients. The Award honors "outstanding contributions by Baylor faculty members to the College’s clinical mission." Those eligible for nomination are "Faculty members involved in the direct care of patients, and in clinical areas such as clinical or translational research, patient safety and quality, clinical diagnostics and healthcare leadership" (bcm.edu/education/academic-faculty-affairs/faculty-resources/faculty-affairs-development/recognition/faculty-awards-patient-care)).


From the CDC Fact Sheets available in English and Spanish:
CMV Fact Sheet for Pregnant Women and Parents

"Had I Known (about CMV)" MASTER.mp3 by Debra Lyn  Alt: 

Wednesday, May 25, 2022

NY Lawmakers Pass "Elizabeth's Law" to Educate Pregnant Women and Child Care Providers on Cytomegalovirus (CMV), #1 Birth Defects Virus

 



The New York Assembly passed “Elizabeth’s Law” (Assembly Bill A7560B/Senate Bill S6287C) on May 24, 2022, which requires "the  provision  of informational materials to child care providers and certain physicians and midwives regarding the impacts and dangers of congenital cytomegalovirus  infection  and  the treatments and methods of prevention of cytomegalovirus infection". (Photographs of the New York Assembly voting on  A7560B/ S6287C taken by the Assembly sponsor of the bill, Assemblymember Linda B. Rosenthal, on May 24, 2022.)

New York Lawmakers Pass "Elizabeth's Law" to Reduce Disabilities From Congenital Cytomegalovirus (CMV)


Awaiting Governor Kathy Hochul to Sign or Veto "Elizabeth's Law" (A7560B/ S6287C) to 

Educate Pregnant Women and Child Care Providers on CMV, #1 Birth Defects Virus 




Photograph of Elizabeth Saunders (1989-2006), of "Elizabeth's Law", surrounded by 222 silver cytomegalovirus (CMV) awareness rocks, representing the estimated number of children in New York disabled by congenital CMV each each year, at a June 2021 Cytomegalovirus Awareness Month event in Lyons, New York (photograph by Lisa Saunders).



Albany, New York--On May 24, the Assembly passed "Elizabeth's Law", A7560B (Rosenthal, L) /S6287C (Mannion, J). After the bill was introduced, Assemblymember Rosenthal explained her vote. She said, "This legislation is named in memory of Elizabeth Ann Saunders who died from a seizure at the young age of 16 in 2006. Elizabeth was born with brain damage from a congenital cytomegalovirus infection--a little known disease that can have devastating impacts on newborns. The disease is commonly transmitted through bodily fluids of young children, and while most adults can go on to live healthy lives with CMV and show no symptoms, for a pregnant person, the infection can cause permanent disabilities for their newborn, including microcephaly and hearing loss. Nationwide, up to 40,000 infants are born with CMV. Each year, approximately 400 die from this infection. Elizabeth's mother Lisa Saunders worked as a child care provider when she contracted CMV while she was pregnant and asked the same question that so many families affected by CMV ask: 'Why was I never told about this?' Since Elizabeth's passing, Lisa Saunders has made it her mission to help stop the spread of CMV nationwide. Under the legislation we are passing today, child care providers and pregnant people visiting an OB/GYN will be given the info necessary to learn about CMV and the simple steps they can take to prevent transmission. I want to thank Lisa Saunders, Dr. Sallie Permar at Weill Cornell, Dr. Sunil Sood of Cohen Children's Medical Center and the entire STOP CMV coalition for their efforts in helping me to move this bill forward. I'm proud to cast my vote in the affirmative" (The public can watch the proceedings by clicking here: A07560B).


According to Robert Harding, politics reporter for The Citizen, "The state Senate passed Mannion's bill again in early May, but lawmakers worked on finalizing an agreement that could clear both houses. The Senate passed the amended bill by a 61-0 vote on May 23. The next day, it was approved by the state Assembly in a near-unanimous 147-2 vote. It will be sent to Gov. Kathy Hochul for her signature. Her office has not indicated whether she will sign or veto the measure" (NY lawmakers OK CMV awareness bill named in honor of CNY couple's daughter, Auburn Citizen, 2022). 


When “Elizabeth’s Law” was first passed by the New York Senate in 2021, Senator John Mannion stated, "My legislation will provide for training and increased awareness so expecting moms have the information they need to make informed decisions to keep themselves and their babies safe. I thank and commend Lisa and Jim Saunders, who have turned their heartache into potentially life-saving action" ("NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness", The Citizen, Harding, R., 2021).


Lisa Saunders of Baldwinsville learned about cytomegalovirus (CMV) the hard way. Her daughter Elizabeth was born with a severely damaged brain from the virus in 1989. Saunders was at higher risk for contracting CMV because she had and worked with toddlers, who are often excreting the virus. “When I was pregnant with Elizabeth, I ran a licensed child care center in my home, volunteered in our church nursery and a toddler— all activities that put my pregnancy at higher risk for CMV — yet I never heard of it. I completed hours of training to get my in-home daycare license, but nowhere was I told of my occupational hazard for CMV until after Elizabeth was born. Like me, many women caring for toddlers (their own or professionally) admit to sharing food with them and using diaper wipes to clean up urine or saliva to save time. Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014). Elizabeth had cerebral palsy, developmental delays, epilepsy, and vision and hearing loss. She died at Nyack Hospital after a seizure at the age of 16 (Lohud, 2006)."


”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,” stated 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 (NYMetroParents, 2016).  
 
More than 30 years after the birth of Elizabeth Saunders, women are still largely unaware of CMV--until it’s too late for them to prevent it. ”Imagine giving birth to a seemingly healthy newborn baby, only to find out a few weeks down the road that your baby is deaf…That is what happened to a Western New York family and they have found that they are not alone…” Marielle Fitzgerald, the baby’s mother, said, “‘Like most pregnant women, I did everything I could to ensure a healthy pregnancy…I followed all of my doctors recommendations to avoid certain foods. I didn't go on a vacation to Florida with our family to avoid Zika, right? But no one probably ever said I should avoid my own daughter's saliva. And if they had, I would have’”(CMV: Virus causing deafness in newborns, WGRZ-TV, 2017).

Dr. Sallie Permar, Chair, Department of Pediatrics, Weill Cornell Medicine, and pediatrician-in-chief, New York-Presbyterian Komansky Children's Hospital, known for her “groundbreaking work on mother-to-child transmission of viruses" stated that CMV is "'a virus that has a PR problem. It's the most common congenital infection in every population...It's a virus we have recognized for over 60 years as the cause of birth defects and brain damage in infants...'" (“Dr. Sallie Permar’s Work Protecting Mothers, Infants from HIV, CMV Lands Her Among ‘Giants’”, Weill Cornell Medicine, 2021
Throughout her medical career, Gail J. Demmler-Harrison MD, Attending Physician, Infectious Diseases at Texas Children's Hospital and pediatric infectious disease specialist at Baylor College of Medicine in Houston, has been advocating for CMV education, but progress has been slow. Featured in the New York Times article, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed" (Saint Louis, 2016), Dr. Demmler-Harrison stated that not providing CMV counseling is "a missed opportunity to save a baby from the devastating effects of CMV, including death in the womb and permanent disabilities.'"


When Lisa Saunders participated in an online New York State Legislative Women's Caucus meeting in March 2022, Assemblymember Linda B. Rosenthal told the group that when she read the 2016 New York Times article about CMV, she thought something had to be done. She sponsored the 2018 CMV law that helps diagnose children with congenital CMV by requiring “testing for cytomegalovirus of newborns with hearing impairments" (Assembly Bill A587C). 


Angela Cote of Buffalo appreciates the 2018 CMV law because it led to the quick diagnosis of why Elise, born in 2019, failed her newborn hearing test, giving her access to early intervention, but Angela wishes she had known about CMV before her pregnancy.  She told Lisa Saunders in a public access TV interview how shocked she was by the diagnosis. She couldn’t believe she had never heard of CMV, especially since she was surrounded by young children as a nanny and the mother of a toddler  ("CytoMegaloVirus (CMV) - What Moms Wished They Knew," PAC-B TV, 2021).

Kelly Smolar Gerne, a mechanical engineer from Brooklyn told Lisa Saunders, "My daughter Alexis was born in August 2020 with congenital CMV. With the help of Northwell, Dr. Sood and Nurse Stellato, Alexis is thriving because she was diagnosed and treated early following a failed newborn hearing test. While I am angry about the lack of CMV education prior and during my pregnancy, the CMV testing law passed in 2018 meant our family was the recipient of those who had fought before us. I want to continue that forward so all babies in the State of New York will have the option for early intervention."

Brandi Hurtubise of Buffalo told the National CMV Foundation on
Facebook about her second child Samantha, born in  2016 with congenital CMV.  "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." 

Assemblymember Rosenthal now hopes to improve CMV education with “Elizabeth’s Law” (Assembly Bill A7560B/Senate Bill S6287C). When she sponsored the 2021 Cytomegalovirus Awareness Month Proclamation, it inspired an event in Lyons, New York, where 222 silver rocks were placed on the Trail of Hope to honor the estimated number of babies born each year in New York disabled by congenital CMV (Finger Lakes Times, June 2021). Two moms in attendance, Jessica Keukelaar of Macedon and  Kristin Schuster of Canandaigua, might have contracted CMV through their caregiver/teaching occupations as neither had children of their own during their pregnancies. Jessica is the mother of Kyleigh born with congenital CMV in 2018. She shared with Lisa Saunders the letter she sent to Assemblymember Rosenthal’s office where she stated, “I was a caregiver in a daycare center when I became pregnant with my daughter born with congenital cytomegalovirus (CMV)... I had never heard of CMV or the precautions to take. This bill [Elizabeth’s Law] is important to me because it came as a complete shock when my daughter was born full term, in 2018, with numerous urgent health issues due to CMV...My daughter has developmental delays, spastic cerebral palsy which affects her entire body, eating and digestive difficulties, progressive hearing loss, microcephaly, and more...Congenital CMV has affected every aspect of Kyleigh’s life, as well as our whole family. I wish that someone took the time to educate me about CMV since I was at an increased risk of infection.” 

Kristin Schusterthe mother of Autumn born with congenital CMV in 2015, had also never heard of CMV, or that she was at increased risk for the disease because of her occupation. She told Lisa Saunders, "I was teaching in a pre-kindergarten inclusion classroom while pregnant with Autumn and was unaware of the dangers of CMV exposure." Autumn can be seen helping her mom and Saunders place the silver CMV rocks to the music video, “Had I Known) (about CMV), Lyrics and Music by Debra Lynn Alt”, which also features images of those attending the event including Jessica Keukelaar with her daughter Kyleigh and Assemblyman Brian Manktelow, a co-sponsor of "Elizabeth's Law."

Gail J. Demmler-Harrison, MD is delighted by New York's efforts at CMV education. She sent Assemblymember Rosenthal's office a letter of support for "Elizabeth's Law" stating, “Approximately 1-4% of all pregnant women will experience a primary CMV infection during their pregnancy. If you work in a child care setting, the risk increases to approximately 10%. If you have a toddler at home who is actively infected with CMV and shedding CMV in their saliva or urine, the risk is even higher, approaching 50% in some studies." Her letter concludes: "When mothers and fathers sit across from me in my CMV clinic holding their little baby and ask, 'Why weren't we warned about CMV,' it's heart-breaking. All I can say is, 'I don’t know, I’ve been trying for over 30 years to educate pregnant women about CMV.'”--Gail J. Demmler-Harrison MD.


According to Nellie Brown, MS, CIH, the following workers are at risk for CMV: "Childcare workers, early interventionists, early childhood providers (including daycare providers, pre-school teachers) and Healthcare workers (including nurses, therapists)" (Occupational Exposure to Cytomegalovirus (CMV): Preventing Exposure in Child Care and Educational Settings, Including OSHA AdvisoriesCornell University, ILR School, Workplace Health and Safety Program, 2019).

In addition to mothers and caregivers/teachers of toddlers, congenital CMV also affects certain populations more than others. Studies have shown that there are "Racial and Ethnic Differences in the Prevalence of Congenital Cytomegalovirus Infection" (2018). (Watch short video, "CMV Racial Disparities", The Massachusetts Congenital CMV Coalition, 2022).

Edel Law of Tappan told Lisa Saunders that Elizabeth's Law "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."

In her effort to get New York legislators to pass "Elizabeth's Law", Lisa Saunders and her husband Jim, a recently retired Pfizer scientist, are walking across the State of New York between Buffalo and Albany on the 360-mile Erie Canalway Trail, leaving behind #StopCMV rocks painted by Tabitha Rodenhaus of Buffalo, the mother of Kaia born with congenital CMV in 2016. Jim and Lisa tell those they meet along the Trail, including doctors who have asked them about their #Stop CMV rocks, of their belief that CMV education is a "women's rights" issue--that all women of childbearing age have the right to know about CMV. Lisa says, "Congress created the Erie Canalway National Heritage Corridor in 2000 because it ensured that "social reforms like...the women’s rights movement spread across upstate New York to the rest of the country..." (Congressional Bills,106th Congress, 2000). As of June 22, 2022, Lisa and Jim have walked 45% of the way across the State of New York (163 miles). Saunders created a dramatic one-minute trailer of their trek: Erie Canal Trail Challenge to Stop CMV Birth Defects. Pass "Elizabeth's Law" - A7560/ S6287A.  

Lisa Saunders hopes the public will contact New York Governor Kathy Hochul and ask her to sign "Elizabeth's Law" (A7560B/ S6287C) into law. Saunders said, "If you are composing a letter or email in support of the bill, it would be helpful if it was addressed to Honorable Kathy Hochul and forwarded to Assemblymember Linda B. Rosenthal's office to add it to their packet of letters to present to the governor" (email it to Nicholas R. Guile, Legislative Aide to Assemblymember Linda Rosenthal, at guilen@nyassembly.gov).

To learn more about "Elizabeth's Law", contact Assemblymember Linda B. Rosenthal through: https://nyassembly.gov/mem/Linda-B-Rosenthal/contact/

To help educate the public about CMV, share resources from the CDC CMV Resource Center: https://www.cdc.gov/cmv/resources/index.html

To learn more about Lisa Saunders and the New York Stop CMV Project, write to: LisaSaunders42@gmail.com. Saunders is the author of several books including "Once Upon a Placemat--A Table Setting Tale: Coloring Book and CMV Prevention Tool" (available as a free pdf) and "Surviving Loss: The Woodcutter's Tale(also available as a free pdf). 

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ADDITIONAL INFORMATION

Available CMV informational materials include:

  1. CDC's CMV fliers in English and Spanish.
  2. The National CMV Foundation's fliers/posters include: “ARE YOU PREGNANT”.
  3. For child care workers: CMV Training Module created by the University of Connecticut
  4. Training resources for child care employers/policy makers includes, “Occupational Exposure to Cytomegalovirus (CMV): Preventing Exposure in Child Care and Educational Settings, Including OSHA Advisories (Cornell University, ILR School, Workplace Health and Safety Program, 2019, Nellie Brown, MS, CIH)






Lisa and Jim Saunders leave #Stop CMV rocks, painted by Tabitha Rodenhaus of Buffalo, the mother of Kaia born with congenital CMV in 2016, along the Erie Canalway Trail as they walk across the State of New York trying to raise awareness of CMV and "Elizabeth's Law" (photograph by Tabitha Rodenhaus). 

Today, 5/25/22, I met with Senator John W. Mannion’s office staff at Cafe 108 to thank them for their work as the Senate Sponsor of “Elizabeth’s Law” (S6287C), which has now passed both the Senate and the Assembly. Now it’s up to the governor to sign it into law to prevent the leading viral cause of birth defects, cytomegalovirus (CMV)! (The photo of me holding an image of my daughter and a #StopCMV rock, painted by CMV mom Tabitha Rodenhaus, was taken by Victoria Coit, Director of Public Affairs for Senator Mannion).




Lisa Saunders shows her Stop CMV hand as she and her husband, Jim Saunders, walk the Erie Canalway Trail, which is part of the Empire State Trail (photograph by Jim Saunders). 



Lisa Saunders speaks at the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia, about how congenital cytomegalovirus (CMV) affected her daughter's life and death at the 2008 International Congenital CMV Conference sponsored by the CDC and the Congenital CMV Foundation (photograph by Gail J. Demmler-Harrison MD).


Media Coverage in New York Regarding CMV Legislation



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1-518-474-8390 | Office hours: 9:00am to 5:00pm

Contact By Mail:

The Honorable Kathy Hochul
Governor of New York State
NYS State Capitol Building
Albany, NY 12224


Lisa Saunders letter to the governor: 

Dear Honorable Kathy Hochul:

I strongly support  A7560B/S6287C,named "Elizabeth's Law" in memory of my daughter.  The bill requires "the  provision  of informational materials to child care providers and certain physicians and midwives regarding the impacts and dangers of congenital cytomegalovirus [CMV} infection  and  the treatments and methods of prevention of cytomegalovirus infection". 

The CDC has already created excellent congenital CMV materials in English and Spanish at: https://www.cdc.gov/cmv/resources/pregnant-women-parents.html

My daughter Elizabeth was born with a severely damaged brain from congenital CMV in 1989 and died at Nyack Hospital after a seizure in 2006. When I was pregnant with Elizabeth, I ran a licensed child care center in my home and cared for a toddler of my own--activities that put my pregnancy at risk for CMV yet I never heard of it--most women still haven't. I completed hours of training to get my in-home daycare license, but nowhere was I told of my occupational hazard for CMV until after Elizabeth was born. Like me, many women caring for toddlers (their own or professionally) admit to using diaper wipes to clean up urine or saliva to save time. Diaper wipes do not effectively remove CMV from hands (Stowell et al., 2014). Elizabeth had cerebral palsy, developmental delays, epilepsy, and vision and hearing loss. 

You should be aware that according to studies, there are "Racial and Ethnic Differences in the Prevalence of Congenital Cytomegalovirus Infection" (2018). You can learn more by watching this short video: "CMV Racial Disparities" at: https://fb.watch/ddTMqFlqG-/

The importance of Elizabeth’s Law is evident in the data: with more than 3 in every 5 children under the age of 5 being cared for in a childcare facility, and 30 to 40% of preschoolers in daycare excreting CMV in their saliva and/or urine, and up to 70% of children ages 1 to 3 years in group care settings excreting the virus, I strongly urge the passage of “Elizabeth’s Law.” CMV is recognized as a workplace hazard by the Occupational Safety and Health Administration (OSHA), however, in 2016, only 18.5% of licensed “in-home” daycare providers surveyed had heard of CMV. This level of awareness is insufficient in protecting workers, especially when OSHA acknowledges that childcare workers are at a greater risk of infection.

Increased awareness and education about CMV enhances the health and safety of expecting mothers and their unborn children, while empowering the workforce to make more informed decisions about the occupational hazards of CMV and its prevention. 

Thank you in advance for your help.


Sincerely, 


Lisa Saunders

New York Stop CMV

[my home address and phone #]

Baldwinsville, NY 13027

Music Video "Had I known (about CMV)"





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