Scarlett is 9 years old, the youngest of our four children. I had a normal pregnancy and she showed no signs of CMV at birth.
When Scarlett was five she didn’t pass her hearing screen at a regular doctor visit. In hindsight, she had been saying ‘what?’ a lot and asking for the TV to be turned up…but we hadn’t put two and two together. We quickly learned that she had mild-moderate hearing loss in both ears. We immediately got hearing aids and accepted this disability as positively as we could.
In the following months we saw specialists, had MRI’s and had no answers as to why she had hearing loss. No-one mentioned the possibility of CMV causing the hearing loss.
Fast forward to when Scarlett is almost 8. We banked her cord blood at birth and I occasionally get emails from the cord blood registry…I noticed one promoting a new clinical trial
, we applied and she was accepted. During that process her cord blood was tested and we found out that it tested positive for CMV. We also had genetic testing done and it all came back negative. This was the first we’d heard of CMV! I researched frantically and couldn’t believe what I was learning. How could this virus be so common and no one know about it? We completed the clinical trial, with no improvement in hearing….and long story short it’s progressed since then. She now has moderate-severe loss in both ears.
We don’t dwell on the ‘what ifs’ but I would like to start helping creating awareness to potentially save others having to endure this.
Scarlett is a beautiful, smart, funny, sweet little girl and we are thankful for her and each day that her hearing loss doesn’t progress.
- Shared by her mother, Laureen