Where to start, where to start...
Since moving to Dallas, we've been working with the fine folks over at the Callier Center for all of Milo's audiology services. Milo also goes to preschool there, thanks to Grandma Jan and her connections. (She's the director of clinical education for the graduate program at Callier. A speech-language pathologist whose grandson has hearing loss - go figure! )
Every once in awhile, someone in Milo's support team (audiologists, teachers, speech therapists, etc) would mention the possiblity of him being a candidate for a cochlear implant, but we never thought too much of it until the hearing in his right ear fell to severe-profound. His left ear is at moderate-severe loss. Shawna, his primary audiologist, referred us to the Cochlear Implant (CI) program at Children's Medical Center here in Dallas.
Gulp. This one was, and continues to be, a hard pill to swallow. Hearing aids were an easy decision. (Didn't seem so easy at the time.) But surgery for our 2 year old to permanently implant something in his head that could possibly remove any hearing that he does have? Not so easy.
There are a myriad of pros and cons for having/not having this surgery. If Milo was profoundly deaf, this would be a no brainer: no CI - no sound. Of course we'd get the surgery. Wouldn't even think twice.
However, that's not the case for Milo.
Milo can hear [a bit]. Hearing aids are most definitely benefiting him. He continually performs at (sometimes even above!) typical-hearing children when evaluated for speech and language. Just ask him what sound a snake makes (a hard one for a HOH kid), or what he wants for dinner, or which of the Thomas trains he prefers. This kid has opinions and isn't afraid to communicate them... with [near] perfect 2-year-old speech.
But are the hearing aids enough?
One area of concern that we've been working on is his inflection. Ya know, the highs and lows and pitch of speech. Milo's speech is a bit monotone. CIs could give him better access to those high pitches that he's missing with the hearing aids. Deaf-sounding speech is something we are determined to avoid. A CI could be a possible solution for this.
For those of you (like me!) who don't know much about cochlear implants here are a few of the myths:
- "Just get him an implant - he'll be able to hear immediately!" Nope. Those YouTube videos you've seen where the implant is turned on and the child immediately "hears" for the first time? Not typical - in the least. Cochlear implants aren't a "quick fix" for hearing loss/deafness. The implant bypasses the damaged cochlea, and the brain and auditory nerve have to re-learn to interpret sound in a completely different way. This requires lots and lots of therapy and mapping and adjustments.
- "An implant is completely internal. No one would even know he has it!" Nope. A cochlear implant requires much more [visible] hardware than a hearing aid. The receiver is implanted under the skin in the ear, and externally, there's a microphone (looks like a hearing aid) and transmitter (affixed to the head with a magnet). Not that the cosmetic piece of this would affect our decision, but it's something to consider. Here's an example of what they look like:
Probably the biggest thing holding us back are the "what ifs":
- What if hearing aid technology continues to improve and we don't need to surgically implant something in our kid's head?
- What if he's doing SO well with the hearing aids that he won't have deaf speech anyway? - What if we regret getting the CI? - What if we regret NOT getting the CI? - What if we wait to ask Milo what HE wants? - What if we wait, and it's too late?
We have completed the initial appointment to determine if he's even a candidate. Next steps involve getting tubes in his ears and a sedated ABR (Auditory Brainstem Response) test. The way Milo's hearing is tested at this point is dependent on his cooperation... and if you know any two year olds that love wires protruding from their ears and being still to listen for a beep, well, good for you. Milo does not. He does well, but he's still 2. An ABR will give us a full understanding of what he can hear and what he can't, and we can compare all of the ABRs we've had to see where his hearing falls. We have the ABR on June 9th, and while he's under anesthesia, we'll also be getting tubes put into his hears. We've been told that removing the fluid from his hears can increase hearing levels by up to 15 db.
A fellow HOH (hard of hearing) Mom totally put it into perspective for me: Be prepared. We're going to second guess this decision either way we go. Either we get the implant and wonder what life would've been like without it, or we decide against the implant and wonder what life would've been like with it. Those will be the questions we'll never know the answer to. All we can do is employ all of the resources available to us, listen to the recommendations from his awesome team at Children's and Callier, do the research, and pray.
I told you it'd be long and waaaaay more info than you care to read. If ya made it this far, thanks!
I'll keep ya posted!
Jaime
