CMV New from NY: All newborns tested (DBS) for 1 year, bill submitted for universal screening (PCR), and new travel video features moms raising awareness across the state and song, "Had I Known (about CMV)"

#Stop CMV rocks painted by Kaia's mom, Tabitha Rodenhaus of Kenmore (near Buffalo).

1) "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, Sept. 29, 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. 

2) 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."  "State Sen. John Mannion, who sponsors [this] bill that would make the screening permanent, said early diagnosis and treatment are key in mitigating long-term health problems for babies, emphasizing the need for screening. According to Assemblywoman Linda Rosenthal, who also sponsors the bill, further action will depend on the results of the pilot. (Crain's New York Business, Sept. 28, 2023).  (New York already has laws regarding targeted CMV testing and the provision of prevention education materials to pregnant women and child care providers.)

3) My new 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" showcases the work of New York parents, National CMV Foundation, and others. The video reminds the public that Congress established the Erie Canalway National Heritage Corridor in 2000 because it “facilitated the movement of ideas …like…women's rights…across upstate New York to the rest of the country”(Congressional Bills 106th Congress). 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" (S.Res.215 — 112th Congress, 2011). 

Many women across the country have already signed the "Declaration of Women's CMV Rights and Sentiments," which is based on the 1848 Women's Rights "Declaration of Sentiments" signed in Seneca Falls. The song, "Had I known (about CMV)," expresses how many of us feel. 

There is still a lot to do to raise awareness among women of childbearing age so they can know about CMV before getting pregnant. So, we keep putting one foot in front of the other.

More information about the pilot study below my signature.

Sincerely,

Lisa Saunders

www.AuthorLisaSaunders.com

LisaSaunders42@gmail.com

New York Stop CMV

How CMV affected me: 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). 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. 

New York's Congenital Cytomegalovirus (cCMV) Screening 

(https://www.wadsworth.org/news/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, Sarah Bradley, MS, CGC, 2023).

"With its pilot program, New York is the largest state to enact CMV screening. It's available to about 220,000 babies born annually in the state. State Rep. Linda Rosenthal, a Manhattan Democrat who sponsored Elizabeth's Law, now has a bill before the Legislature following New York’s pilot, that would make universal screening permanent. It expands on a 2018 law Rosenthal sponsored that mandates hospitals test babies for CMV if they fail a hearing screening.

    "The plan is to compare babies who failed a hearing screening with those who tested positive for CMV to babies who did not fail hearing tests, said Dr. Michele Caggana, director of the New York State Department of Health Newborn Screening Program." (USA Today, Oct 2, 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). 

The following mother expresses why screening all newborns for CMV is important:

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"  (https://congenitalcmv.blogspot.com/2023/01/new-york-test-every-newborn-for-cmv.html).

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 Kristin with her daughter Autumn 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", The Post-Standard, Vallelunga, E., Jan.1, 2023, Syracuse.com, Dec. 27, 2022 (Facebook). 

It's interesting that 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).  

Minnesota has a good list of protocols to follow when a child tests positive for cCMV: https://www.health.state.mn.us/people/newbornscreening/program/cmv/faq.html