Team Stop CMV NY

Join Team Stop CMV NY as we host our own local Strides 4 CMV event benefitting the National CMV Foundation.

Meet us at 11:00AM at Knox Farm State Park, Small Mansion Loop (437 Buffalo Rd., East Aurora, NY 14052). The Small Mansion Loop begins near the Frame Dairy Barn off of Willardshire Road.

OUR STORY:

When I was 18 weeks along in my pregnancy with my second child I went in for what was supposed to be the 'fun' ultrasound; the ultrasound where you can find out the gender of your baby. Unfortunately my 18 week ultrasound was anything but fun. My unborn baby had an echogenic bowel meaning the bowel showed up brighter than bone on the ultrasound; an indicator of possible complications. I would go on to be seen by several specialists through out the remainder of my pregnancy. I was told that my baby was measuring small, her head was measuring very small, there was too much fluid in her brain, and my placenta was measuring large. I was told that something was wrong with my baby but no one knew what. Congenital Cytomeglovirus was brought up during my pregnancy and it was ruled out; I was also assured that even if my baby was born with Congenital Cytomeglovirus the worst that would happen would be that my child may lose their hearing. This was all incorrect information. On January 26, 2016 Samantha was born. The delivery room filled with doctors and nurses that began to immediately use the word microcephaly. Samantha was jaundice, covered in petechiae, and she had an enlarged liver and spleen. Shortly after her birth Samantha had to be transferred to another hospital that had a higher level NICU than the hospital she was born in. A diagnosis of congenital CMV would later be given. As a result of Congenital Cytomeglovirus Samantha has spastic quadriplegia cerebral palsy, microcephaly, epilepsy, profound hearing loss, and is legally blind.  She has had to endure surgeries, hospital stays, and countless tests and blood draws. Samantha was born 7 years ago and to this day very few people know what congenital CMV is or how it can be prevented. I was given incorrect information by medical professionals both during my pregnancy and after my delivery. CMV is something that everyone should be talking about; at the very least it needs to be that piece of knowledge that's at the back of your brain and stored away for another day.