Well, first you have to be deaf. The FDA guidelines currently require that you have severe-to-profound bilateral sensorineural deafness, that you do not receive benefit from hearing aids, and that you're at least a year old. Well, phooey on them. The FDA guidelines are just that -- guidelines, and not legally binding.
Ben does indeed have severe-to-profound bilateral sensorineural deafness. The hearing loss classifications (mild, moderate, severe, profound) are determined by hearing thresholds, as given in decibels (dB). (Actually, they are given in dB HL, i.e. hearing loss decibels. Nobody has been able to give me a straight answer as to exactly what these are, and how they are related to the regular decibel system, which essentially tells you how loud a sound is. Specifically, the number of decibels is the logarithm of the power of the sound. But I digress.) For example, if you hear nothing below 90 dB, then you are profoundly deaf. This is all complicated by the fact that almost nobody has the same degree of loss over the entire frequency range. Typically, a person has better hearing at low frequencies than high ones. In his left (better) ear, Ben hears "low" frequencies (low for the purposes of speech perception, namely 500 Hz) at around 65 dB. Higher frequencies he doesn't hear until around 80-90 dB. So the hearing loss in his left ear is severe-to-profound. The loss in his right ear is profound.
The "sensorineural" part means that the hearing loss is due to problems in the inner ear, auditory nerve, or higher levels of auditory processing, as opposed to an obstruction or abnormality in the outer or middle ear. In Ben's case, the culprit is the hair cells in the cochlea.
Some people have a "reverse slope" hearing loss, meaning that they hear better at high frequencies. (Leah, if you're reading this, I'm thinking of Nolan here.)
The FDA used to require a profound hearing loss for CI candidacy. Then it was discovered that profoundly deaf people with CIs performed better than severely deaf people without them, and it seemed a bit unfair to deny the latter group the benefits of a CI. In fact, I think that people with CIs often perform better than people with moderate hearing losses; however, at that point, the benefits may not be substantial enough to warrant the costs and risks of surgery.
You need to undergo a trial period with hearing aids in order to demonstrate that you do not receive (sufficient) benefit from them. Ben was first fitted with aids back in January of 2008. After a couple of months, we were increasingly confident that he was getting some meaningful sound in his left ear, but it seemed like there wasn't much going on in the right. This was verified by a number of hearing tests in Buffalo and at the NYU Cochlear Implant Center, where we went for candidacy evaluation in June. We took advantage of the hearing in his left ear to pump as much sound and language into him as we could, and I think this early exposure has been very beneficial to him. But it was pretty clear that the amount and quality of sound that he was getting with the aids was insufficient for spoken language development over the long haul.
Another thing you need before CI surgery is a CT scan or MRI, to look for structural abnormalities that might complicate the surgery or render the implant ineffective. Ben had a CT scan in May.
Now, Ben was implanted at 8.5 months. Increasingly, CI surgeons are implanting before 12 months. Some implant centers still refuse to do this. One of the reasons that we travelled to New York City is that the NYU Center has done many implantations at less than 12 months. We are absolutely convinced that Ben's rapid and easy progress with hearing and language with the CI is largely due to his early implantation, and the extra four months of hearing this bought him at a crucial period of development.
Our insurance company was not so enthusiastic, though. After initially telling us over the phone that they had no minimum age requirement for CI surgery, they then refused to approve the procedure, on the basis that implantation before 12 months is still considered "experimental." We found this out a few days before we were supposed to head back to NYU for the surgery. Maybe I'll give the full story of our insurance battle in a future post, but the short version is that we launched an expedited appeal, our surgeon intervened on our behalf, and eventually we were approved. Our surgery date had to be pushed back a little over a week, but that and a boatload of stress were the only costs to us.
So Ben went in for CI surgery on Friday, July 11. The operation went beautifully and quickly. We spent one night in the hospital, and he was discharged around noon the next day. He recovered very quickly. The device was not activated until July 31, because the incision site needs to heal completely. I'll give a full account of activation another time. This post is already quite long enough!
A feedback from a deperate parent
2 weeks ago