Journey to Baha

Archive for February 2009

You know, I never was very good at this waiting thing. I am, by nature, an impatient person. So when it comes to waiting for something that is such a good, exciting thing for one of my kids, I am fairly miserable.  I hate that there is nothing I can do to make the process go faster. The bottom line is, we need isurance approval; and approval for non-critical surgeries like this takes time. So we wait.

While I’m waiting, I am trying to fill our time with things I can do. I have scheduled Reed’s tour through the surgery department and ordered him a medical playkit from the hospital (which came today and he was so excited). I spoke with the Child Life department this afternoon about getting him some pictures of the dressing he’ll be sporting post-op. And beyond that, I have obsessed. I have googled the BAHA and everything associated with it so many times, I’m starting to annoy myself. My poor husband and friends. I can only imagine how sick they are of hearing about it. Ha! Oh well, all I can do is wait, so wait I will. I just hope it doesn’t take too long, or I might be too crazy to consent to anything by the time they finally get this thing scheduled.

It’s an exciting day around here. We’ve just returned from the ENT where we started the ball rolling on Reed’s BAHA surgery. Turns out my neurotic need to have all the i’s dotted and t’s crossed when he was younger has come in handy. His CT from several years ago was what put us over the top for a decision today. His CT was normal, so his hearing would likely be helped by the implant. I filled out the surgical boarding forms in the office and now we just have to wait for insurance approval and an OR date!

Reed was so excited when the Dr. said he’d be a candidate for one, he was lobbying to get it done today! He apparently thought we were there to get it done, not ask about it. He was looking around the room for the drill, wondering if he’d be home in time for lunch. He was quite disappointed when I told him it probably wouldn’t be for at least a few weeks. I’m not sure how long to expect the approval process to take, but it would be great if he could be activated before Daddy takes the boys on their trip to New York City in September. Before school starts after Labor Day would be even better.

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I figure this whole blog will make a lot more sense if I give some background, so here’s where we begin:

Reed was disgnosed with a unilateral hearing loss at birth. He passed his newborn hearing screening on his left side, but failed on his right. We were assured that many kids fail because of amniotic fluid trapped in the ears and go on to pass subsequent tests. We made our appointment with the hospital-recommended audiologist and set about enjoying our new bundle. A few days later, we packed him up in the car and headed back to the hospital to have him rechecked, confident that everything would be fine by now. After all, birth defects are something that happen to other people’s children, right? And long before he was born I was a deaf education major, for crying out loud! The odds of having a hearing impaired child would have to be astronomical, right? Wrong, apparently. Reed once again passed on the left and failed on the right. Still hopeful, we asked what the chances were that the results were still caused by fluid and were told it was extremely unlikely. There was no evidence of fluid in his ears and his tympanograms were normal. We were scheduled to return for an ABR to determine his actual level of hearing. We returned twice for the ABR, and both times he steadfastly refused to sleep through the test (have you ever seen a 1 week old newborn stay awake for 2 hours, despite being nursed and rocked twice? It’s not a pretty sight). So at 5 weeks old, we returned once again to have him tested under sedation. The results were not what we’d hoped for: a profound unilateral sensorineural loss. We discussed his prognosis with the audiologist who told us that he would do just fine with the hearing on his left side. We asked about hearing aids and cochlear implants. He was not a candidate for either. Hearing aids just make the sound louder so it can be picked up by less-sensitive hearing. Reed has no usable hearing on that side. Cochlear implants are not an option for those with a unilateral loss. He mentioned the possibility of a CROS aid, but said in his experience they were not largely helpful and most kids were unhappy wearing them. He recommended waiting until he reached school age and letting him help make the decision. And so we waited.

We came in once or twice a year for audiograms, and were pleased to see no change. His hearing is completely stable for now. And so we waited some more, unhappy with the choice of CROS aids or nothing. Periodically, I’d ask Reed if he was bothered by his hearing loss, and he never seemed to care. Finally, in January 2009, after an annual audiogram at school, he admitted that he wished he could hear bilaterally. I explained about the CROS aids, and he seemed interested so I made an appointment with his ENT.

While researching CROS aids, I stumbled across a mention of the BAHA (Bone Anchored Hearing Aid) for Single Sided Deafness. I was intrigued. Nearly everywhere I turned for information on it gave glowing testimonials from people who had and loved it. The same could not be said for the CROS aids. This seemed to be just what we were looking for. I think I may have driven everyone I know a little crazy, talking about it so much while waiting for his appointment.

So now you’re up to speed. Stay tuned for the results of today’s ENT appt.