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Lisa Saunders and her husband Jim , a recently retired Pfizer scientist, leave behind #Stop CMV rocks as they walk across New York State on the Erie Canalway Trail. Their daughter Elizabeth (1989-2006) was born with brain damage from congenital CMV. Tabitha Rodenhaus of Buffalo paints these rocks to honor daughter Kaia born with congenital CMV in 2016. Lisa says, "My
husband and I are placing these rocks along the 360-mile Erie
Canalway Trail as we walk across the state between Albany and
Buffalo. These rocks are meant to honor the children lost to CMV and
to remind us of the work still ahead to ensure all newborns are
protected from CMV through prevention or by receiving the proper
treatment at birth. As of today, Jim and I have walked 189
miles—more than halfway across the State of New York."
Elizabeth Saunders born with congenital cytomegalovirus (CMV) in 1989. Mother Lisa Saunders, a New York resident, asks that all newborns be tested for CMV.
IMMEDIATE RELEASE
Lisa Saunders
Baldwinsville, NY
About Lisa's CMV work
New York State Passed "Elizabeth's Law' to protect babies from Cytomegalovirus (CMV),
#1 birth defects virus
Next goal: Universal testing--test ALL newborns for CMV
"Perhaps no single cause of birth defects and developmental disabilities in the United States currently provides greater opportunity for improved outcomes in more children than congenital CMV" (Cannon and Davis, "Washing our hands of the congenital cytomegalovirus disease epidemic, 2005).
On November 28, 2022, the governor signed "Elizabeth's Law" (A7560B/S6287C) to ensure pregnant women and child care providers get information on preventing the leading viral cause of birth defects, cytomegalovirus (CMV). Lisa Saunders of Baldwinsville, mother of Elizabeth (1989-2006), says she is thrilled that New York women will finally have a chance to learn how to protect their pregnancies from CMV. A child care provider when pregnant with Elizabeth, Lisa says, "Women who have or care for toddlers are at higher risk for contracting CMV." Racial and ethnic minorities are also at higher risk for CMV: "Cytomegalovirus (CMV) is the most common infectious cause of fetal malformations and childhood hearing loss. CMV is more common among socially disadvantaged groups, and it clusters geographically in poor communities" (Geographic Disparities in Cytomegalovirus Infection During Pregnancy, Lantos et al, 2017).
According to the CDC, one in 200 babies born with congenital CMV (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). 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).
"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). Dr. Sood’s efforts to prevent the consequences of congenital CMV include co-authorship of a study “Valganciclovir for symptomatic congenital cytomegalovirus disease”, 2015, and his newborn CMV screening program at Northwell Health has become a model for the State of New York.
As a result of Elizabeth's Law, “Expectant parents and caregivers of New York will be empowered to prevent the transmission of congenital CMV, the leading infectious cause of birth defects and infant brain damage, because of this legislation. Assemblymember Rosenthal's leadership, and the support of her colleagues in the Legislature, on this important public health issue will help ensure all infants have a healthy start to life,” said Dr. Sallie Permar, Chair of the Department of Pediatrics at Weill Cornell Medicine and Pediatrician-in-Chief at New York-Presbyterian/Weill Cornell Medical and New York-Presbyterian Komansky Children's Hospital. (NYAssembly.gov: “Assemblymember Linda B. Rosenthal Bill to Educate Childcare Providers, Pregnant Patients on Cytomegalovirus Dangers Signed into Law,” Nov. 2022)
Kelly Smolar Gerne of Brooklyn, a mechanical engineer and 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."
The targeted CMV testing law passed in 2018 was also spearheaded by Assemblymember Rosenthal. When she read the 2016 New York Times article, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed", she felt that something had to be done.
In 2023, Assemblymember Linda B. Rosenthal is seeking to amend the 2018 CMV law, which requires that newborns showing a hearing loss be tested for CMV, to requiring all newborns be tested for CMV. (In 2022, Minnesota became the first state to pass legislation requiring every newborn be tested for CMV.)
Joseph Domachowske, MD, "professor of pediatrics, microbiology and immunology with a specialty in pediatric infectious diseases at SUNY Upstate Medical University," said, "not all congenitally infected babies have hearing loss at birth, and most babies born with CMV can be asymptomatic, so the best way to diagnose CMV early involves prevention education and better forms of testing. 'Hearing tests are somewhat helpful, but it’s not the best answer, and it’s not the best way to handle this,' Domachowske said. “What’s coming down the pike is adding CMV to universal newborn screening panels, and having that test done will be very specific for CMV” (Post-Standard, "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter", Emma Vallelunga, Jan.1, 2023, Facebook post).
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."
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).
In 2022, the NY Department of Health, Wadsworth Center, announced: "the New York State Newborn Screening Program was recently awarded a contract from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) to provisionally add congenital Cytomegalovirus (cCMV) to our screening panel. All babies will be tested for this infection." (NY DPH, 2022).
Anyone who would like to learn more about the New York CMV laws can contact Assemblymember Linda B. Rosenthal’s office at 518/455-5802 or Nick Guile, Legislative Director for Assemblymember Rosenthal, at guilen@nyassembly.gov.
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In an effort to continue raising awareness of CMV, Lisa Saunders and her husband Jim, a recently retired Pfizer scientist, leave behind #Stop CMV rocks as they walk across New York State between Albany and Buffalo on the 360-mile Erie Canalway Trail. Lisa says, "As of November 2022, Jim and I have walked 189 miles, which is 53% across the State of New York. We walk in all kinds of weather, which means we've been chased by mosquitoes, biting flies, lightning, torrential downpours and blinding snow. We’ve confronted snakes, floods, slippery ice, chafing underwear, aching feet, swollen knees, and a desperate need to find a bathroom. But it's all worth it if our walk brings attention to CMV!"
Brandi Hurtubise of Buffalo, New York National CMV Foundation Alliance Chair, can be reached at nationalcmvny@gmail.com or visit: nationalcmv.org. Brandi said, "My daughter Samantha will never walk or talk independently because of a virus no one told me about. No one told me I shouldn't share drinks or food with my toddler while I was pregnant with my daughter. 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 more common than Down Syndrome" (NYAssembly.
Additional quotes and 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 American Academy of Audiology recommends early identification of congenital cytomegalovirus (cCMV) through screening to allow for appropriate early diagnosis, intervention, and monitoring for congenital, progressive, and delayed-onset hearing loss in infants with cCMV."
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).
The CDC states, "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).
Children born with symptomatic 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).
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."
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 (CMV - An often unknown cause of hearing loss, 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).
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).
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On November 28, 2022, the governor signed "Elizabeth's Law" (A7560B/S6287C), named in memory of my daughter, to ensure pregnant women and child care providers get information on preventing the leading viral cause of birth defects, cytomegalovirus (CMV).
Please see these press releases from the sponsors of the bill, plus my own that follows:
- NYAssembly.gov: “Assemblymember Linda B. Rosenthal Bill to Educate Childcare Providers, Pregnant Patients on Cytomegalovirus Dangers Signed into Law,” November 28, 2022.
- NYSenate.gov: “Senator John W. Mannion’s legislation to protect pregnant women from dangerous viral infection that’s a leading cause of birth defects is signed into law,” November 28, 2022.
Angela Cote of Buffalo appreciates the 2018 targeted CMV testing law, also spearheaded Assemblymember Rosenthal, 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).
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