In all my confusion over the hearing aid, I posted a message on my atresia/microtia Yahoo! group discussion board: "Are those of you with kids with unilateral hearing loss using a BAHA?" Some parents wrote back saying "My kid hears fine out of the one ear so I figure why bother." Others wrote back "My kid has had a BAHA since she was four weeks old." One woman emailed me to say that her daughter is six years old and they recently started with the BAHA:
"We did not use a BAHA until 6 months ago - and
she is now 6 years old. Everyone told us how well she was doing,
didn't need it, her audiograms in her hearing ear were all normal - and
so we waited. We wish we would not have waited (especially since we
really did know better - but we were sort of in denial.) As soon as
she started school this year (she already has been in 2 years of
preschool and Kindergarten) and began writing larger words we noticed
her dropping of the endings, substituting letters, omitting beginnings
and we took her to a different audiologist at another institution and
she said, "didn't anyone suggest a BAHA?"
Now
she turns 7 in a month and with language acquisition kind of ending by
age 8 - and more importantly the majority of it starts as a baby and
ends at about age 5 (but don't quote me on that - you can google it) so
- we are behind and it is much harder to catch up than it is to attack
it head on. When people write in that their child's speech is fine, no
problems are being seen and other comments I am happy for them, but we
never knew our daughter would have problems and now we can not take that time back. Do we wish we would have started with a BAHA
immediately?? ABSOLUTELY And when we put it on her we could tell
right away that it helped. She became much more aware of noises and
softer sounds - including the softer consonants in speech which affects
reading, writing, all subjects in school. It took about 6 months for
her to get used to the band, but now she doesn't even begin her day
without grabbing the BAHA."
I found it very encouraging that it took them six months to get their child used to the BAHA. That sounds backwards. What I mean is, the fact that Charlie takes it off after half an hour does not mean it's a lost cause.
I asked that mom if she had considered the surgical option. "Yes," she said,"but we have to wait until after ear reconstruction." I hadn't thought of that. So I emailed Dr. Reinisch, the guy in L.A. who I think we're going to have do Charlie's ear some day. "Does it matter when you do the BAHA surgery?" I asked.
Dr. R. got back to me immediately by phone. He said that the BAHA company tells doctors to put the BAHA five centimeters behind where the ear canal is or should be; he says that puts it right in his way. He suggested putting it seven centimeters behind. Better yet, he said he'd do it himself, when he does the ear. FABTACULAR.
Meanwhile, Dr. Kenna still hadn't gotten back to me about my variety of hearing aid and double-ear-canal-ectomy questions, so I made an appointment to bring Charlie in. I think she should see the opening to the second canal in person.
And slowly but surely the pieces of the ear puzzle will all come together.
Today Charlie wore the hearing aid during his morning "Karate Chop Turtles" program (a DVD of Teenage Mutant Ninja Turtles episodes that he bought at the consignment shop with the $4.00 his great-grandfather gave him for his birthday); during speech; and after speech while I read him a Charlie Brown Thanksgiving story book.
