Three dedicated CMV advocates have teamed up to host this important awareness event!
Jami's Story -
My water broke with Nathan at 30 weeks and I spent 4 weeks on hospital bed-rest away from my other son, Liam. Nathan was born at 34 weeks and he was perfect! We were admitted to the NICU for breathing problems, eating problems, and jaundice. At 3 days old the doctors informed us that Nathan had been diagnosed with CMV, a term I had never heard of. The hospital didn’t know much about it, except the extreme cases. We were assured Nathan was healthy and not to be worried.
We spent 54 days in the NICU and at discharge were told to follow up with Audiology at 6 months old. We were given no information on CMV, treatments, or how serious it is. Most doctors we have come in contact with know very little about CMV, which makes it difficult for intervention.
Today Nathan is profoundly deaf in both ears, and we utilize Cochlear Implants and American Sign Language. He is severely off balanced, delayed in speech, and has multiple health issues we are just beginning to understand. It's beyond frustrating that there are so many misconceptions surrounding CMV, when it is such a common virus.
We ride for awareness and education on CMV!
Erin's Story -
My pregnancy with Matthew was incredibly difficult. During my first trimester, I became very weak and had extreme mono-like symptoms. These symptoms continued to persist throughout the duration of my pregnancy. After many abnormal ultrasounds, an amniocentesis revealed that I had contracted CMV and, unfortunately, passed the virus onto my baby in utero. My husband and I were shocked, as this was the first time we had ever heard of this COMMON and PREVENTABLE virus. Two weeks later, at only 32 weeks pregnant, I unexpectedly went into preterm labor. On March 26, 2016, Matthew was born, weighing only 2 lbs., 11 oz. During his 46 day stay in the NICU, doctors discovered that Matthew had brain damage, bilateral hearing loss, dangerously low platelet and red blood cell counts, and an enlarged liver and spleen. The past few years have been very difficult for our family because we continue to see the devastation that CMV can cause. In August 2018, Matthew was diagnosed with severe autism. He has cochlear implants, low muscle tone, and speech apraxia. Matthew attends speech, physical, occupational, and multiple Applied Behavioral Analysis therapy sessions each week. Despite his disabilities, Matthew is a thriving three year old and an extremely happy boy. We are so proud of the progress that he has made! My husband and I have made it our mission to educate people about CMV and to encourage the medical community to routinely test newborns for this virus.