Our Uneasiness With Cochlear Implant Surgery
Every day parents make decisions that affect their children. We decide to vaccinate, or not vaccinate, feed our kids organic food, or Kraft Mac n’ cheese, allow screen time or not… and on and on. Our faith, personal experiences and political and social beliefs shape how we parent. Niko and I do the best we can and we really have no idea what we’re doing! Parenting is hard; harder than we ever imagined. We’re a normal family with our own quirks and we’re just trying to figure it out as we go. With that being said, our situation is pretty unique. We’re two hearing parents of hard of hearing and deaf kids. We’re being asked to make a decision by the end of the year that will absolutely determine how our child experiences the world for the rest of her life. Not many parents have to do that… it’s pretty heavy.
I believe as a mother you have to take every outside person’s (doctors included) suggestions and opinions with caution. I am not saying I’m a know-it-all, because I certainly don’t. But I DO believe God has entrusted Niko and I with these little lives and He will direct our decisions for them. Through His guidance I am confident we will make the best decisions for Bear and Mila.
So, before I go any farther, there’s two things you need to know.
- I am a skeptical person. Always have been.
- I am not an audiologist 🙂
Because I’m not an audiologist, I am BEYOND thankful for the amazing people who do choose to go to school forever and ever to become one. They’re experts in their field and we are SO thankful for the technology we have today that pin pointed our kids’ varying degrees of deafness so early. Really, it’s a miracle and it wouldn’t have happened without them. They are amazing. But at the end of the day they are there to do a job (and they’re really good at it by the way). That job is to identify and fix hearing loss. Fixing hearing loss is the default response in the medical community. Flash forward to diagnosis day and not only was I ignorant to the facts and details of what a CI is, but there was something about the way our audiologist said “Mila is profoundly deaf but we can do a Cochlear Implant” in the same breath that made me suspicious. There was no pause in between those two thoughts. It was like “here’s what’s wrong with your child, and this is how we fix it.” Neither of us had yet processed that Mila was deaf, and all of a sudden we were being forced into a mold. We felt rushed. It was assumed we’d pick the CI for Mila- why wouldn’t we? We’re hearing parents of a deaf child, we’d be silly not to, right? My knee jerk reaction kicked in and immediately I felt like we weren’t getting the full picture. From the moment she was diagnosed to the time we left the hospital we were only told about the benefits of the implant. There was no talk about doing our own research, talking with other families in similar situations, or using sign language. In fact they strongly discouraged it, as many in the audiology world view it as a crutch to spoken language. For example, in that appointment I casually mentioned that Bear would be attending TSD in the fall and they looked at me like I had seven eyeballs. They just don’t understand why a hearing family would choose an ASL based learning environment for their hard of hearing child. Over the past few months we’ve been told pretty bluntly that we’re wrong for even considering TSD, but that’s another story.
All of that to say…
This topic is extremely touchy, so please understand that the below sentiments are mine and Niko’s only, and like I mentioned earlier- our opinions aren’t very popular. At the end of the day do I really care what the Deaf community or hearing world thinks about our decision as a family? Nope. But on the other hand, we want to absorb every bit of information we can, and this means listening and considering all sides, because there’s not just two sides; implant, or not implant. I don’t speak for any other family and I certainly don’t speak for the Deaf community. These are simply the conclusions we’ve come to in our research thus far. Ask us tomorrow and it could be different 🙂
I believe the reasons for choosing an implant are pretty self explanatory, just google “kid hears mom’s voice for the first time” and you’ll see why. So I will only explain our hesitations to the CI as those might be a little harder to understand. I know many of you must be shocked that we’re not jumping at the opportunity to do the implant. It seems a natural choice since she was born into a hearing family, right? But we’d argue that this isn’t about what’s best for our hearing family. It’s about what’s best for her, as a deaf little girl born into a hearing world. Sure, you could say that what’s best for her is the opportunity to be a part of the hearing world. And maybe you’re right, but we’re not completely settled on that yet. There is no universal “right” decision. There’s a right decision for each individual family… and we’re still navigating our journey and figuring that out.
So, here we go, these are the reasons we are weary of Cochlear Implant surgery:
- Plain and simple, it’s brain surgery! There are risks anytime someone goes under and it’s not something to take lightly or just brush off. An overwhelming number of CI surgeries are successful, which is very encouraging. But just because it’s a frequently done procedure doesn’t make this mama any more comfortable with it.
- Just like with any other piece of technology, the implant could fail after a period of time. I read of a 9 year old having to go back into surgery 4 times because the implant kept slipping off the nerve, rendering it completely useless. That’s four brain surgeries before the age of 9! Many CI users report having debilitating migraines, vertigo and other issues since having their implants activated. Some even end up taking them off completely and never using them again. Not to mention, since the CI uses magnets, an MRI is out of the question if she were to ever need one.
- As of right now, the doctors do not know what’s causing her hearing loss. Now, I’m not a doctor, but from our many appointments I can explain her hearing loss like this. A person hears normally when the hairs in the cochlea move and vibrate sending messages to the nerves in the brain, which translates those vibrations as the everyday sounds we hear. When a person is diagnosed with sensorineural deafness (like Mila) essentially it means they don’t know where the hearing loss is coming from- the sensory part, neural part or a combination of both. It could be sensory (hairs in the cochlea are bent or not there at all) or neural (some kind of disconnect between the nerve and brain.) A cochlear implant basically uses electrodes to transmit sound, completely bypassing the biological cochlea. For the past 30 years, the practice has been to strip patients’ hairs in their existing cochlea in order for the implant to work. This means that any residual hearing she DID have (and she does have some) would be gone. She’d be entirely dependent on the cochlear implant for the rest of her life. End of story. (But just recently we’ve learned that certain surgeons have developed a procedure that does NOT strip the remaining hairs. This is fantastic news! See why below.)
- Piggy backing off the above argument- once she’s stripped of any hair cells in her cochlea, she could never be considered for any other treatment that could potentially be more successful than a CI, not to mention much less invasive. I’m talking about stem cell therapy. This is a massive discussion that I’m just starting to tap into and frankly it’s a lot of big words and terms that I feel silly using. But let me just say this- there are some seriously exciting things happening in the world of stem cells. In short, researchers in Japan are successfully regenerating cochlear hair cells in mice using their own stem cells. These researchers think they could be duplicating this treatment in humans in just 5 years. WHAT.
- We don’t ever want Mila to think we tried to “fix” her. She is perfect from head to toe right now. There is nothing we could do for her or to her that would make her better than she already is. We believe we were given the responsibility of being her parents for a reason although it’s still unclear. We don’t want to miss out on that bigger picture because we were nervous of what others would think of our decision, because we’re intimidated about learning a new language, or because it would be overall easier for our family life if she was hearing. We believe that this journey we’re on is a blessing and we don’t want to miss out or take a short cut out of fear.
- Above everything else, our stance right now is that we don’t want the implant to be something that was done TO her. Rather, we want Mila to be able to choose it if/when she’s ready. And yes, that means we might wait past the “hearing window” that doctors make you fearful of missing. There is evidence that giving a child access to spoken language before the age of 2 sets them up for success with spoken language. Well, duh. But is our ultimate goal for her to speak? Not even close! Our goals for her (and Bear) are so much more than that. We want her to have language, read and write English, communicate effectively with her family and have a vibrant relationship with Jesus. And the best news is that all of that can start RIGHT NOW. She’s not dependent on speech to do any of that. I can communicate with both of my children right now through sign language. I don’t have to wait till they’re two+ years old and can tell me what they do/don’t want, if they’re sick or hungry. What a GIFT to have language and communication now! If she were to ask years down the road to have an implant we will absolutely do it. Because then she’ll be in on the process and it won’t be an irreversible decision that was done to her when she was little. But of course, if she never chooses an implant, that’s fine too. In that case, thank God we started reading, writing and using ASL from the beginning.
This decision is not black and white. It’s not just to do the CI or not do the CI. If that were the 1st decision, then there’s a 2nd or 3rd layer of decisions to be made too, that all depend on what decision we make first. For example-
- If we do the implant, do we still enroll her in Texas School for the Deaf so she can be a part of the Deaf community she was born into? That way she’d have access to ASL at school and a more verbal environment at home, meaning she’d be bilingual. Or do we enroll her in public school? If we enroll her in public school we have the authority to tell the school district the way we want her to be taught. We can choose ASL, SEE sign, or Oral teaching structures. Which one do we choose?? Should we homeschool her? That opens a million more teaching strategies and puts a whole lot of pressure on us as hearing parents of a deaf child.
- If we don’t do the implant, that means Niko and I are REALLY doing this thing, ya know? And of course we’d do anything for her, a million times over. We desire so much to communicate with Mila as well as we can with Bear. But not implanting her means that her first language will be ASL, which is tricky since Niko and I aren’t fluent yet. TSD seems to make sense as an education choice if we don’t implant but are we closing her off to socialization in the hearing world by sending her to a deaf school? I don’t know.
So, you can see why this is all so incredibly overwhelming. There’s a million questions and emotions running through our heads at any given time of day. I wake up thinking about it and run through it all again before I fall asleep. In order to be considered for the implant surgery next year we have to keep doing more tests to prove she’d be a good candidate. Right now we see no harm in doing that although our minds are still not made up. Would you pray with us for her upcoming tests? We’re hopeful for no big problems that would take her off the candidate list. We need guidance and wisdom to know what it is that God has for Mila.
Thank you all again, from the bottom of our hearts, for the amazing support and love you’ve shown our family. We are beyond grateful to know each and every one of you.