Here is just a quick rundown without all the brilliantly crafted prose of my lost post from yesterday. Charlie had a hearing test at the Children's Hospital satellite in Waltham. It went very well. He wore headphones for the first time, which meant they were able to mask his good ear with white noise and test his wonky ear. He did great with voice commands but didn't respond as well to the straight up beeping tones, so they weren't able to give me a specific range of frequencies for his hearing loss, but basically, things seem the same, which in the world of audiology is good news.
After the hearing test we went downstairs to the Hearing Technology Center where they fit people with hearing aids. I had called ahead and let the woman, Mary Ellen, know that we were interested in the softband BAHA for Charlie.
Mary Ellen told us that a softband BAHA costs $4,000 and is not covered by insurance. "I thought it was considered an auditory prosthetic and not a hearing aid, so they cover it," I said. "Not until the kids are big enough to have them surgically implanted, at age five," she said. I can see the logic there.
Then Mary Ellen explained that a traditional bone conduction hearing aid might actually be better for Charlie because the sound quality is worse. You read that right! See, both the BAHA and the bone conduction hearing aid vibrate the skull, so the good ear picks up the sound as well as the bad ear--you can't only vibrate part of the skull. So what people with unilateral hearing loss do is wear the bone conduction hearing aid, and then when they hear a fuzzier sound, they know that that sound is coming from the side of the bad ear.
The problem I have with this is that localization is the least of my concerns with Charlie at this point. I want him to hear what his friends and teachers are saying, regardless of where they or he is sitting.
Mary Ellen told me that she does not have a BAHA for us to try. "We have one in Boston," she said, "With the audiologist who works with the craniofacial team." I am not sure why she did not tell me this on the phone. I am glad I did not arrange a babysitter and drive 25 minutes for the appointment alone--we had the hearing test too--because Mary Ellen seemed unprepared and frankly, inexperienced with the BAHA. "I've done a couple..." she said vaguely. It's always a little unsettling when your kid has something so unusual that Children's Hospital is not quite sure what to do with you.
I decided to call the doctor in Springfield, Dr. Mason, who talked to us about the BAHA at the microtia/atresia conference in September. He seemed to know exactly what he was talking about, and it sounded like he'd done a lot of them. In some cases, I guess, the Best Hospital in the Universe might not be the Best Hospital for Your Kid. I left him a message today. An hour later Mary Ellen's office called to schedule an appointment for me to come see the BAHA--they're sending it out from Boston. I'm going to talk to Dr. Mason in Springfield before I bother to go back to Children's.
And oh by the way, wouldn't it have been nice if someone had told me that there is an audiologist who works specifically with the craniofacial team? I mean, I like our audiologist, but, duh. It seems like something you should mention to your audiology clients with craniofacial birth defects.
