Thoughts on Bi-Laterals
I feel like I should post where we are at in regards to bi-lateral implantation. I know that some of my earlier posts seem a little anti-bi-lateral. That isn't how I feel. When you have a child with special needs, it is gut-wrenching to make decisions that will effect the rest of their life. The first implant seemed like an easier decision to make. It was the difference between hearing or not hearing. The second implant will improve the ability to hear in noisy situations, to localize sound and have a back-up if one implant fails. I'm sure there are others, but these are the benefits we see as most important in Isaac's case. Ian and I want to make the best decisions possible to help Isaac succeed in life. I guess the hardest part of making the decision to go bi-lateral is future technology. At CHOP our surgeon is part of the team researching how to re-generate hair cells in the cochlea. He won't go into specifics but he says that "new things are coming". This makes us think twice about having Isaac implanted in his other ear. On the other hand. Just hypothetically speaking, if later in his life, it is medically possible for Isaac to hear "naturally", will he be confused asto what he is hearing? Let me specify...If he hears a digital sound in his right ear from his cochlear implant and has natural hearing from his left ear, will he reject the natural hearing? Will the two different sounds confuse him? I just wonder that because he is so used to hearing through the implant will he not like how things sound naturally. For example, I know a few people who wear analog hearing aids and they don't like the sound of the newer digital aids. The prefer the analog ones because it is what they have used for so many years. I wonder if this is how Isaac would feel later in life. Would it be better to maximize his ability to hear with two implants? Also, if we have him implanted now, he will have the same model of implant for both ears. I have read that a totally implantable device is being researched. This would be awesome! Imagine Isaac being able to hear the water running when he is in the shower....or be able to hear his future wife snoring at night. These circumstances will be possible in the future. It is just a matter of time. I am a firm believer that if you can think it, you can do it.
But, if we opt to have Isaac go bi-lateral now we will maximize his ability to learn during the most crucial learning years of his life. We will give him the ability to enjoy music more. We will make the best use of his auditory nerve. Which I must say is a huge factor in our moving forward with bi-laterals. Over time, the auditory nerve becomes less effective if it isn't stimulated. This is why children do so well with CI's and adults have a lower success rate. This makes us wonder if Isaac's auditory nerve will be functioning very well when this new technology emerges.
I know this is a lengthy post, but I feel that I needed to vent because this is why we are struggling with bi-laterals. I know that other families that have decided to go bi-lateral have felt the same things as we are feeling. I know that careful thought is put into every decision these parents make for their children. I have felt a little guilty and depressed because it is taking us so long to make these decisions for Isaac. I know it isn't true, but I feel like other families are so much more "on the ball" than we are with this. We are taking longer to think about it and longer to research it while our son gets older and older. I know that other families feel the same things but it seems like one day, just like that, everyone I know online is going bi-lateral with their child and I feel like whoa....we should be on that ride....or why didn't the train stop for us? Where was I during that decision making process? Maybe I didn't read the blogs carefully enough to know the tug of war these parents were feeling, or maybe they never posted it. There are very few resources for implanted children where we live. I feel like Isaac is the only one in Central PA. My only connections are with the few families I know through CHOP who live hours away and my online friends. I really lean on other's experiences with their children for support, new understanding and encouragement. I just feel like I missed out on the whole decision making process these parents went through. Maybe it something that is more personal and private, but I would really like to hear that I am not alone in these thoughts. It would help my sanity a lot!
That being said we have contacted CHOP to discuss bi-laterals for Isaac. We have yet to hear back.
posted by Shiloh @ 1:37 PM
10 Comments:
Hi Shiloh
I don't have my own blog I just exist through my husband's blog (mysontom.com) so I don't voice my concerns and my thoughts on the decision making process. I do however want to say to you that I really struggled. If I didn't work (and I won't be soon :)) I would love to have a blog of my own and i don't think it would be as positive and upbeat as my husbands because I worry sooo much more. I don't think that we had time to consider things properly. I remember after Tom's first surgery saying to family "I don't think I can do that again" and being told "you have to it's what's best for him". Well we were still in the whirlwind post meningitis, I had lost all my confidence as a parent so just went with it - I now feel terrible about that, I should have been more 'with it'. For Tom we probably wouldn't benefit from any other developments because MRI scans showed signs of ossificiation so our decision was much more straightforward. I can completely understand your thought process, your concerns and how difficult it must be. I think we are now calming down about Tom's hearing loss and I can see that he is doing well - Advanced Bionics has brought out a new system with virtual channels - great and when I heard about it over a year ago I though Tom must have this. Now I think he is doing just great so I don't want to jump on that train I want him to enjoy being a little boy who loves cars, who is happy communicating with his current system. I have gone on and on...I just wanted you to know that I think you are a great parent and that taking the time and considering all the information is fantastic.
Nicky xx
I know, I know, the cochlear implant train moves FAST! I can relate to every word that you've typed. You've done such a fantastic job parenting your boys, don't doubt for a second that you haven't been "with it" enough just because you didn't make this decision with lightning speed. I've written about it here and there, always from the point of view of our concerns over Ethan's motor skills and balance. We don't come at it from the perspective of most parents I've read online who have neurotypical kids. So yeah, it's been a huge issue worth great consideration for our family as well. Not to mention we've already experienced electrode failure that is extremely rare. Sometimes I think it's all a big mind game that I'm trying to win.
Thanks for this post, it was refreshing to read something like this from a Ci parent, honest and not sugar coated in the least.
Wow! You pointed out some very interesting thoughts on the bilateral subject. I never stopped to think about whether Toes would like the way "natural" sound sounded, should there become a way to restore her hearing. That is really food for thought.
I am one that did not post what we went through during the decision making process. I guess I felt that there is so much information out there that parents can find on the pros and cons. Parents need to come to their own conclusions on these decisions. I don't want to try to influence anyone in any way. Because these decisions are so personal.
I also try not to question any other parent's decisions. There are so many different avenues to take on CIs - single or bilateral and ASL, AVT, TC, etc., etc., etc.
I personally don't think there are any wrong decisions when it comes to our kids.
Basically, we made the decision by reading everything we could find on the subject. Then we weighed the pros and cons. The reasons we finally decided to do it now were:
- Sound localization
- Increased access to sound in the classroom, so improved educational setting
- More ease in social settings, less of a chance she'll miss what is being said in group settings.
- Her age. She is young enough that she won't remember the surgery.
I have to say, that even though we made the decision to get the second implant, there are still times that I doubt the decision. Especially when I think about the medical research that is going on.
I think parents in general always second guess the decisions they make for their kids. But in our cases, the decisions are just so much bigger than with "normal" kids.
You are a great mom and are doing an amazing job with Isaac. I so admire your tenacity when it comes to keeping up with ASL. I feel guilt constantly about not going that route right off the bat. We are talking about starting it up now, since Erin's verbal language is finally taking solid root. I just hope I can get my husband fully on board with it. ;)
This decision is not one to make lightly - and is definitely not one that you should feel any pressure to make. You don't have to do it now. You can do it later. Or not at all. Isaac is doing extremely well with one. Don't feel the need to rush into this just because so many others are going through with it. Talk to the doctors at CHOP to get their take on the subject.
I'm rambling here... ;)
E-mail me any time if you have any questions or just want to vent about this stuff. We're all in this together! :D momtotoes@gmail.com
awww.
I really commend your thoughtfulness, and time and care you're taking in this process.
Another thought, you know, adults who are hearing, go deaf, and get implants do adjust to "digital" rather than "natural." Perhaps it could go the other way around, too. *shrug*
It's so hard to say, and nothing can replace these learning years. CHOP is such a wonderful hospital; I'm sure you'll get wonderful discussions there.
*hugs* ILY!
I don't think that we struggled with bilateral as much as others, simply because of Drew's age. It seems to me that all of the research and scientific evidence to do bilaterals has only recently been published, well after many children had their first implant. We knew early on that bilateral was the way for Drew (not necessarily others) and if we had already decided that, why put him through two surgeries?
We also didn't struggle with the hair cell regeneration because of Drew's genetic cause of hearing loss. Connexin 26 babies don't have hair cells, so there is nothing to regenrate. I'm not sure how much that would have been a factor even if we didn't have the connexin diagnosis, simply because of the deterioration of the auditory nerve over time.
I do wonder about future technology - a fully implantable device, etc. But I figure that if that comes avaialbe (which it should in our little guys lifetime) Drew will be able to take advantage of it when his current devices fail, which they are likely to do many times over his life.
Trust your gut and instincts. You are doing a great job with Isaac!
Hi Shiloh,
I've never posted here before, although I've read your blog on occasion (found the link from Erin Toes's website).
My daughter Carys is also a patient at CHOP - she received her implant this past summer and is now 18 motnhs old. I agree - it seems that every CI blog I read lately is about getting bilaterals! It's made me think, definitely. I'm conflicted for many of the reasons you have written about, but also b/c our team at CHOP is quite conservative (we have the same surgeon as you do). We asked about bilaterals before Carys's first surgery and the answer we received was that they currently only recommend bilateral CIs for kids that really struggle with just one. Carys is doing well so far.
We have a bit more time than you - I feel like there is no need to proceed with this (in our case) until we get a better sense of how Carys is doing.
But, from reading your blog, I'm impressed with Isaac! He's doing so well!
Good luck on your journey. I'll keep checking to see how it progresses - for our own interest, but also b/c I wish you and your family the best.
Maybe we'll run into you at CHOP sometime - we're in suburban Philly so it's a much closer ride than for you!
If you would like to get in touch with another CHOP mom, email me at ian_and_jen@yahoo.com.
Jennifer
I find it interesting that CHOP is not on the "bilateral bandwagon".
Actually... it worries me a bit. Seriously. They are one of the best (or is it *the* best?) in the country.
Hmm... What do they know that I don't know? :p
Drew's Mom... Toes is also Connexin 26. Her ENT is involved in many C26 studies. He has said that they really don't fully understand the C26 connection to deafness.
The theory was that there are no hair cells in C26 people. He explained that now the thought is that the "pump" that pushes fluid past the cells doesn't function in C26 people. Which is why some infants fail, pass, then fail their tests. As Erin did. The pump goes through a period of trying to function... then stops altogether.
Toes had "hearing days" as an infant. I have no doubt of this. If she had no hair cells, this wouldn't have happened.
Anyway... what I am getting at is that there are a lot of conflicting theories on C26 kids and deafness (and all other causes of deafness).
Drew's doctor is right. Erin's doctor is right. Based on what research they decide to follow.
Because of that, I fully understand and support any family that holds off on bilateral implants in the hopes that there will be a way to correct the physical issue that caused their child's deafness.
I can't help but think that one day they may be proven right in their decisions.
Not that we are wrong. Of course. :-p
Shiloh, this was a great post. I am glad you brought this out. Maybe we CI bloggers have done a disservice to new parents by not having a more detailed discussion on this.
I think the biggest thing we can learn from the differing opinions is that there are no right and wrong decisions on the subject.
And we are still in this together.
Thanks everyone for your posts. I am not sure why CHOP is so conservative about bi-laterals. It's been more than a week later and we still have yet to hear back from CHOP about Isaac. I think we are just going to discuss it at his next mapping. From going to the CI picnic there and some parent panels. There is only one girl that I know of from CHOP with bi-laterals. And from what I understand, her mom had to really push for them. I'm really not that concerned about Isaac's development with one implant, however I do wonder if he will want another one. One time he found the back-up implant I carry around in my purse and he tried to put it on his other ear, but that only happened once. I know that bi-laterals are better than one implant. We are still cautious. I have been told that I think about things too much and "over analyze" them. In this case I feel like it could be good.
I agree. In this case it is definitely good to overanalyze. :D
I love that he tried to put it on his other ear!!! What a smart boy.
Hey it's me Kylie's mom....
As far as CHOP not getting back to you it took us a long time to hear back when we were trying to decide for Kylie. They got everything approved 1st through the insurance.
As many other people have said you are a great mom and Isaac is doing so well because all that you have done for him.
I am still a little torn about what to do with Kylie. If she wasn't progressing so well with the 1st one I would push the 2nd CI.
We have our yearly appointment with Dr. K on the 14th. So I will be asking some more questions about the hair cell regeneration.
We will also be there on the 6th for her mapping.
As far as everything sounding different. I know a little girl that is about 12 and she has a different CI in each ear and even with that she says she can so tell a difference and does prefer the old one also.
After speaking with her, if we chose to go bi-lateral I would want to do it sooner so that Kylie would have the same in both sides. Just my 2 cents!
Talk to you soon.
Nicole
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