My son Ryan Benoumad was born on April 15th, 2017 at MGH in Boston. He failed the Newborn Hearing Screening and was tested for CMV using a mouth swab while we were still in the hospital. A week later we got a call from the pediatrician with test results that came back positive for CMV. My son was born with progressive bilateral hearing loss and now 4 years later he is completely Deaf with behavioral concerns and now wears cochlear implants in both ears. I was fortunate enough to have my son at MGH Boston, being one of the most prestigious hospitals in the United States, but they are still way behind with any information at all about CMV. I never got my questions answered with medical professionals and when I asked my ob-gyn at MGH why they don’t educate people about CMV her response was “We don’t want to scare people, and CMV is not common.” Needless to say, I was very taken back by her response and all responses from medical professionals for that matter over the past 4 years. I have been forced to become a strong advocate for my son along with educating medical professionals about how common CMV actually is and how preventable this virus is. Even with basic education around CMV, it could have a huge impact on the number of growing cases every day.
Marilyn Benoumad (Winthrop, MA)