Chief - New York
Chief is 13 months old. He was born on April 30, 2016 and failed his newborn hearing screens in the hospital. He was scheduled for a follow-up ABR 6 weeks later, which confirmed his hearing loss was profound.
Immediately, I questioned the cause of his hearing loss. We had no family history of hearing loss. I had a healthy and normal pregnancy and delivery. In my research, I came upon CMV through the National CMV Foundation’s website. I read that the highest risk group of pregnant moms passing CMV to their babies were moms of toddlers in daycare. My 1 year old was in daycare while I was pregnant.
An alarm went off. I questioned our pediatricians about CMV. I was repeatedly told there was no way my son's hearing loss was caused by CMV. I continued to ask every specialist we saw this past year if they'd consider CMV as a cause for his hearing loss: geneticists, neurologists, infectious diseases, ENT and even my own OB/GYN. We were told over and over that his symptoms weren't "typical" of a congenital CMV infection. However, I knew based on my research that this was not true and the range of symptoms is wide. His symptoms may not be severe, but they were definitely typical.
After all of his genetic tests came back normal, I requested his heel prick from the state of New York and sent it to a research lab in Alabama to be tested. The results came today. Positive. A year later, my suspicions were proven true. My hope in sharing our story is to raise awareness and push healthcare providers to consider CMV as a possible diagnosis when a child is born with hearing loss.
- Shared by his mother, Marielle