Even on my third pregnancy three years ago, I had never heard of CMV. It wasn’t something OB/GYN’s talked about. It wasn’t something I heard from my PCP. It wasn’t in the literature I was provided. No mention at all of the fact that extra precaution washing your hands was important when you have other small children, which are spreaders of CMV.
The first time I became aware of it was when my son’s left ear failed the newborn hearing screen at BIDMC in Boston. They ran a quick swab, told me it was no big deal and discharged us an hour later. At a follow-up with the PCP, the pending test was noted, but never followed up on or discussed. We never heard anything about it again.
Until, two months later, we had a follow-up hearing test at Boston Children’s Hospital that showed all of Ryan’s hearing was gone. What he had at birth had declined rapidly. The audiologists immediately asked about the results of the CMV test, which I didn’t have an answer to, but assumed it was negative because we hadn’t had results reported to us. They reviewed his records from the birth hospital and found the test, unread and positive. We were immediately swarmed with doctors and specialists that would help assess and monitor the impacts of the virus. It is an evolving and never-ending concern while we support his development through the effects of CMV, not the least of which is his profound hearing loss that resulted in cochlear implant surgery at 10 months old.
To say the impact on Ryan and our family has been immense is an understatement. Had we known about CMV, had we been educated, had we received our positive test result and been given the opportunity to provide a potential hearing-saving antiviral medication, who knows where we would be today.
-Danielle Lavon (Billerica, MA)