Thanks for visiting our National CMV Foundation campaign page.
We are excited to be raising support for this important organization.
The mission of the National CMV Foundation is to bring awareness to congenital cytomegalovirus (CMV). The most common viral infection that infants are born with in the United States, occurring in 1 in 200 births.
Because CMV is a silent disease – meaning most people who are infected have no signs or symptoms – the mother is likely unaware she has an infection during pregnancy. Babies born with congenital CMV may have birth defects and/or experience a vast range of developmental disabilities. And 91% of women DON’T know about it.
Please support our team and the National CMV Foundation.
I had a routine and seemingly healthy pregnancy, so when Evan was born at full term weighing only 5 pounds, we were afraid something was wrong. During labor she struggled, developing slight neutropenia and a small petechia rash soon after birth. Since the hospital couldn’t figure out exactly what was going on, they admitted her to the NICU for monitoring. She ended up being monitored in the NICU for 6 days. During this time, she failed four hearing screens in her right ear, yet each time we were reassured that it was likely due to fluid from birth. On the 6th day, they discharged her with the assurance that she was fine. It was only when we followed up with our pediatrician two days later that the possibility of CMV was ever mentioned. As we waited in the lab that day to complete the blood test, I started to read about Congenital CMV. I read that women who have a toddler at home and work with small children are at the greatest risk of coming in contact with CMV. Both were risk factors that described me. I read that low birth weight, petechia rash, and neutropenia are symptoms of CMV. I also read that CMV is the leading cause of non-genetic hearing loss. To say we were terrified is an understatement, but we were also angry that we were never made aware of this preventable virus and the devastation it can cause. This is what drives us to fight for awareness, education, and change. Evan, now seven months old, was diagnosed with cCMV at two weeks old. She was immediately started on a strong antiviral that she continues to take, and is a candidate to receive a cochlear implant around her 1st birthday. This journey has been incredibly difficult and we still have unknowns ahead of us, but we are so grateful for the work of the National CMV Foundation and our Doctor, Gail Demmler. We are hopeful for the change they will bring for future generations.