Children and Cochlear Implants

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I’ve been blogging a lot about how my fiance reacts to certain aspects of my hearing loss.  It’s always interesting to figure out his perceptions.  I suppose I’ve always been used to people just kind of . . .getting it, you know?  Most of the people in my life have known me a long time, so my hearing loss isn’t something that confuses them anymore.  I have to keep reminding myself that my fiance has known me for a little over a year and half.  It feels like he’s known me forever.

We were talking about hearing loss and kids a few days back when the topic of cochlear implants came up.  He already knows that if we have girls, there is a very high chance that they will be hard of hearing (it seems to run through the females in my family).  He is of the opinion that if our future daughter’s hearing was severe enough, we’d get her fitted with a cochlear implant.  

I told him it’s not that simple.

Deciding to get implants for your child is not as easy a decision as getting hearing aids,which are not permanent, as cochlear implants are.  You are making a decision that will change the life of your child forever.  As far as I know, there is no going back if you decide to implant your child.  In addition to being permanent, you have to keep in mind that the implants may not work.  What then?

What if you implant your child when they are very young and they resent you for it later because they feel that the implants prevented them from being part of the very selective Deaf community? Or, what if you don’t get your child implants and they resent you for not giving them the opportunity to hear?

It is also important to note that like hearing aids, cochlear implants DO NOT fix hearing.  It doesn’t work that way.  It just helps a little. It’s complicated, so I won’t go into it just now.  That might be a topic for a different blog.  

Oh, and I won’t even bother mentioning the cost of cochlear implants.

Needless to say, the decision is not an easy one no matter how you look at it.  John told me he would just want to make sure he made the best decision for his child, and I totally get that.  That’s why it’s so hard.  How do you know if it really is the right decision?  I don’t think you can know without having the ability to look into the future, which we don’t.  I’m hoping the doctors will be able to help John and I make this decision if and when we get to that point.

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About ewindheim

My name is Erin. I am 28 years old, and I live in Colorado. I love to write and to read, and I am a huge cat lover. I have always loved to write, hence why I have a blog. If you want to know more about me, read my blogs or simply ask. ;)
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6 Responses to Children and Cochlear Implants

  1. kdb71 says:

    I’m of mixed opinion on this. Personally some can do well with hearing aids as I did, but at the same time, the C.I. gives that much more sound. We all know that the sooner deaf children are diagnosed and fitted with hearing aids, the better. As sound is very crucial for speech development, but also for overall learning and growth for infants and toddlers. The kicker is, at that young of age, they can’t tell us what they can hear, or need. Nor can the audiologists definitively determine just how steep the loss really is. Unless it’s clear it’s a total deafness. Therein lies my issue, do I try hearing aids first, or jump right to the C.I. option if the loss is profound enough, just to give my child every possible advantage? They’re still Deaf, no matter which decision I make, and I would still use ASL regardless etc. The implant, can be removed, and has been for some for various reasons, but the hearing, if any that was there residually, is forever gone. It isn’t an easy decision, but I also understand why hearing parents leap towards the promise of the C.I., because the potential for better hearing, and in their eyes, a better life is there. All three of my children are hearing, so that decision isn’t necessary for us.

    I had to make my own decision, not four years ago almost, when I finally qualified. I’d lose my residual hearing, and would in essence make myself deafer upon implanting. However, I stood to gain so much more, and with my past success with the hearing aids, the potential for me to hear and function almost like a hearing person was very good. I have only done the auditory verbal therapy and rehabilitation since October 2013, and have gained so much already, that it’s astounding me. Yet my therapist says that because I was so strong in the past, it doesn’t surprise her in the least.

    Would I have liked my parents to have implanted me if it had been possible in 1974? I don’t know. I really can’t answer that. I think the decisions they made ultimately ended up being the right ones, by fluke, by persistence on their part, their support, and by my own strength of will and persistence and loads of hard work on my part. Technology is changing so quickly, that one day, they may be able to implant a NEW fully functioning Cochlea, or in fact any part of the ear structure, like the middle ear bones. Now THAT would be interesting to see, and the debates that will surely arise from that will be no different than now over the Cochlear Implant.

    If one day that is your future, I know you will make the best decision with information and technology available for your child.

    • eesreilly says:

      Thank you for commenting and sharing your thoughts.
      These kinds of things are never easy. I’ve heard that they are working on stem cell research to regrow the follicles that create sound in the cochlea. We could easily see something come out of that in our lifetimes. Isn’t that amazing?

  2. kdb71 says:

    Reblogged this on Breaking the Sound Barrier and commented:
    Sharing this post, as it is a topic that affects a lot of parents, and a lot of people have differing views on this.

    This is my take, as it stands, after 19.5 months post surgery.

    I’m of mixed opinion on this. Personally some can do well with hearing aids as I did, but at the same time, the C.I. gives that much more sound. We all know that the sooner deaf children are diagnosed and fitted with hearing aids, the better. As sound is very crucial for speech development, but also for overall learning and growth for infants and toddlers. The kicker is, at that young of age, they can’t tell us what they can hear, or need. Nor can the audiologists definitively determine just how steep the loss really is. Unless it’s clear it’s a total deafness. Therein lies my issue, do I try hearing aids first, or jump right to the C.I. option if the loss is profound enough, just to give my child every possible advantage? They’re still Deaf, no matter which decision I make, and I would still use ASL regardless etc. The implant, can be removed, and has been for some for various reasons, but the hearing, if any that was there residually, is forever gone. It isn’t an easy decision, but I also understand why hearing parents leap towards the promise of the C.I., because the potential for better hearing, and in their eyes, a better life is there. All three of my children are hearing, so that decision isn’t necessary for us.

    I had to make my own decision, not four years ago almost, when I finally qualified. I’d lose my residual hearing, and would in essence make myself deafer upon implanting. However, I stood to gain so much more, and with my past success with the hearing aids, the potential for me to hear and function almost like a hearing person was very good. I have only done the auditory verbal therapy and rehabilitation since October 2013, and have gained so much already, that it’s astounding me. Yet my therapist says that because I was so strong in the past, it doesn’t surprise her in the least.

    Would I have liked my parents to have implanted me if it had been possible in 1974? I don’t know. I really can’t answer that. I think the decisions they made ultimately ended up being the right ones, by fluke, by persistence on their part, their support, and by my own strength of will and persistence and loads of hard work on my part. Technology is changing so quickly, that one day, they may be able to implant a NEW fully functioning Cochlea, or in fact any part of the ear structure, like the middle ear bones. Now THAT would be interesting to see, and the debates that will surely arise from that will be no different than now over the Cochlear Implant. Will it happen in my lifetime, maybe, but I don’t know if I would ever attempt it. Funny thing is, I said that about getting the Cochlear Implant, and look where I am now.

  3. vivifymyfam says:

    I have a couple of relevant comments.

    Firstly, our daughter, who has bilateral implants, just got a “revision” surgery done, or explantation. So she was one of those very rare instances that everybody dreads. Her electrode array began pulling out of the cochlea very slowly. No one can really give us a good answer as to why it happened (device or procedure?) but perhaps we’ll figure that out soon. Long story short, we’re getting back in the groove pretty quickly. She’s hearing pretty well less than two weeks after her surgery. So my point is that I think implant procedures are so much more commonplace now, that it is probably a lot safer than it was even 5 years ago. Definitely not any easier for us as parents, though, even on the third go-around.

    As for residual acoustic hearing, we were very interested in preserving our daughter’s. We saved her umbillical cord blood at birth, and are hoping those stem cells contained within will someday bring her acoustic hearing back (her hearing was normal up until age 3 when it began declining). Regardless of that far-off cure, hybrid acoustic-electric implant systems, which is like a hearing aid and implant programmed to work together, are now emerging, helping to enhance the hearing experience of those with some acoustic hearing left.

    Residual hearing can be preserved through a “soft” surgery, designed to be less traumatic to the inner ear. My daughter’s surgeon was sucessful on this all 3 times. No guarantees of that residual hearing staying around forever, as her hearing loss is progressive. But it makes us feel better that the inner ear structure can function closer to normal, and the surgery didn’t physically change our daughter as much. This speaks again to the expertise now available in the field of cochlear implants.

    Lastly, I’ve read lots about not just surgeons, but mostly researchers who are so passionate about making cochlear implants better for the user. Because of this, I fully expected my daughter to go through implant surgery again at some point to take advantage of new technology. Just not this soon, of course.

    That said, if she for some reason feels like she doesn’t want to use her devices later on in life, she can do that. All she needs to do is not put her processors on. Her life (and ours) won’t be easy, but based on the results we have had so far, I very happy and very proud.

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