NY 2nd State Testing All Babies for CMV. Couple On Trail to Stop Virus

This 1-minute video, "Erie Canal Trail: Stop Cytomegalovirus (CMV) Birth Defects. Pass "Elizabeth's Law," features, in a lighthearted way, what it's like for my husband and I to walk across the State of New York to raise awareness of CMV.

Congress established the Erie Canalway National Heritage Corridor because it “facilitated the movement of ideas …like…women's rights…across upstate New York to the rest of the country”(106th Congress, 2000). We are determined to walk the entire 360-mile Canalway Trail because we, too, want to “facilitated the movement of ideas," such as a woman's right to know about CMV prevention. We are leaving #Stop CMV rocks along the Trail to comply with Congress' recommendation that "more effort be taken to counsel women of childbearing age of the effect this virus can have on their children" (112th Congress, 2011).

In 2022, “Elizabeth’s Law,” named in memory of our daughter, was passed in New York requiring the provision of CMV educational materials to child care providers and pregnant women. But, there is still a lot to do to ensure women of childbearing age know about CMV before getting pregnant to better prevent it from happening to their baby. So, we keep putting one foot in front of the other. Women across the country have signed my document, "Declaration of Women's CMV Rights and Sentiments," which is based on the 1848 Women's Rights "Declaration of Sentiments" signed in Seneca Falls.

Now this is exciting news: "The New York State Department of Health announced that effective October 2, 2023, all babies will be screened for Congenital Cytomegalovirus (cCMV), making New York the second state in the nation, after Minnesota, to screen all babies for the virus" (NY Dept. of Health, 2023). The NY Newborn Screening Program is provisionally adding congenital CMV (cCMV) to its "screening panel for a period of one year" using dried blood spot (DBS) (NY Dept. Health, Wadsworth Center, Sept 1, 2023). More information below my signature.

In addition, on Sept. 20, 2023, the New York Assembly and Senate introduced bill A07997/S07659: "Requires cytomegalovirus screening for every newborn by administration of a urine polymerase chain reaction (PCR) test."

My new, 30-minute travel video about our 360-mile walk across New York State to raise CMV awareness is now airing. "Hiking the Erie Canalway Trail, Vote on 7 Wonders, Stop CMV". It showcases the work of New York parents, National CMV Foundation, and others. The song, "Had I known (about CMV)," expresses how many of us feel. The Stop CMV rocks are painted by Tabitha Rodenhaus, Kaia's mom.

The 200th Anniversary of the Erie Canal is being celebrated during the “bicentennial period” of 2017-2025. If we push harder, maybe we can finish our 360-mile Challenge in 2025 - exactly 200 years after the Canal was completed.

For more information about the CMV pilot study, see below my signature.

Sincerely,

Lisa Saunders, New York Stop CMV

How CMV affected us:

Our daughter Elizabeth was born with brain damage in 1989 because I contracted CMV just prior to or during my pregnancy. I might have prevented her disabilities had I known to lessen my "risk of getting CMV by reducing contact with saliva and urine from babies and young children...not sharing food, utensils, or cups with a child" (CDC.gov/CMV).

About New York's Congenital Cytomegalovirus (cCMV) Screening: According to the September 8, 2023, webinar held by New York State Newborn Screening Program, the goal of testing every newborn for cCMV for one year is to help answer questions about whether or not universal cCMV screening can be successful nationwide. They need to see if cCMV can be detected by dried blood spot newborn screening and, "Is catching and diagnosing cCMV at birth helpful?" It is believed that "Screening in a diverse population like New York will help determine true incidence" (Newborn Screening for Congenital Cytomegalovirus: A 1 Year Pilot, 2023). I'm delighted about the pilot study because, in addition to being helpful in regard to early intervention and research, it will further educate healthcare professionals about CMV. Too many children with disabilities have never been properly diagnosed with congenital CMV. The article, "Washing our hands of the congenital cytomegalovirus disease epidemic," makes the point that 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).

This mother's story expresses why screening all newborns for CMV is important. Kristin Schuster of Canandaigua, mom to Autumn (born 2015), told me, "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"

Kristin's daughter, Autumn, was her first child, so Kristin assumes she caught CMV from the young children she worked with. Kristin told me, "I was teaching in a pre-kindergarten inclusion classroom while pregnant with Autumn and was unaware of the dangers of CMV exposure." (You can watch us placing Stop CMV rocks at our June CMV Awareness Month event in the music video, Had I Known, Lyrics and Music by Debra Lynn Alt , 2021.) Kristin, myself and Brandi Hurtubise, New York National CMV Foundation Alliance Chair and mother of Samantha, are featured in the article, "How a Baldwinsville mother fought for 30 years to pass a law that might have saved her daughter".

Thankfully, recent newborn screening for CMV has seen a decrease in congenital infections. "'The hygienic precautions we all have engaged in during the pandemic -- masking, hand-washing and infection prevention behaviors -- were almost certainly responsible for the reduction in CMV transmission, which in turn protected mothers and newborns from the potentially devastating effects of the CMV virus,' Schleiss said in a school news release. Researchers also attributed the reduction to stay-at-home initiatives and the closing of group child care centers during those months."(Pandemic Silver Lining: Drop in Infections That Cause Birth Defects, USNews.com, Sept. 12, 2022).

More Information:

1. NYSenate.gov: “Senator Mannion and Assemblymember Rosenthal Announce Addition of Congenital Cytomegalovirus (CMV) to State's Routine,” Sept. 29, 2023.
2. NYAssembly.gov: “Assemblymember Linda B. Rosenthal Bill to Educate Childcare Providers, Pregnant Patients on Cytomegalovirus Dangers Signed into Law,” November 28, 2022.
3. 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.