I’m signing because our precious daughter was born with CMV and thankfully it only affected her enough to cause some permanent hearing loss In both ears. More people need to be aware of this scary virus!
Congenital cytomegalovirus (CMV) infection is arguably the most common, preventable cause of neonatal disability in the United States, affecting more than 30,000 children a year. It is the leading cause of non-genetic hearing loss in children, and about one in every five children born with CMV will suffer permanent, irreversible disabilities, including: sensory, physical, and cognitive deficits.
According to the Centers for Disease Control and Prevention (CDC), CMV is a common, symptomless virus affecting over half of adults by age 40, but it’s a serious concern for pregnant women.
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.
We are advocating for 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. The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) and the Secretary of Health and Human Services oversee the application process and make the final decision on adding conditions to the federal RUSP.
Our application is currently under review. Please sign our petition to show your support. We are in the business of saving babies.
Read about some of our amazing CMV kiddos here, and learn more about congenital CMV at NationalCMV.org.