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.)
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 email@example.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 firstname.lastname@example.org.
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).