Father Confused on Coclear Implant Decision

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Ivan's Dad

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We were recently informed that our 2 1/2 year old, severe (right), profound (left) deaf son is a candidate for an implant. He was born with his coclea only partially formed (Mondini).

This decision seems almost impossible for us to make.

He loves his HAs and wears them everyday. With our speech pathologist we are trying to help him make sense of what he hears but he has yet to start communicating orally (except for shouting out to get our attention.) He does hear things like crows, airplanes, dogs barking, phones, eggtimers ect. and can distinguish between them. He signs dog when he hears one and looks to the sky when a plane flies by.

We are all learning ASL together and use sign language to communicate with him. He has come a long way in the past year since we learned of his deafness. He has a large vocabulary and is starting to form short 2 or 3 sign phrases.

We have made some friends in our local Deaf community and seem to have more support from them than the people helping with his oral skills.

Concerning the decision for the CI: it would be easier to decide if he did not like his HAs but since he does, we are very concerned if the quality/quantity of hearing will improve with a CI.

It is also very difficult to have faith in the Coclear implant team who seems to be reluctant to be open and honest concerning the possible outcomes from the implants. One person informed us that ALL hearing parents choose to implant their deaf children if they are a candidate (in the past few years). Another person involved with the cochlear implant team in Toronto told me that every child who recieves an implant succeeds in learning to speak. Is this true or is this just a sales pitch?


Ivan is a great kid and he always has been "normal" to us. We accept him for who he is and I would be devistated if the CI changed his life for the worse.

Then I think: his left ear is profound...... maybe it would help.......then I think: he doesn't even have a normal cochlea how would the electod array fit in? But he would have more oppertunities if he was to learn to communicate orally....... But what about the time devoted towards the rehibilitation taking away from him just being a kid. Arrrrg.

It would be great to hear from people with mondini defects who have coclear implants.

I am new to these sort of forums so please be patient.
 
As a teacher at a deaf school, I have seen children with CI who do not benefit from them at all. Most of them started out in the public schools but were unable to keep up with their hearing peers so they got sent to our school. I cant say that it is true for all children with CIs but just telling u about my experience. I am sure there are others who have a completely different experience. Maybe they will post their experiences in this thread soon.
 
Re: Father Confused

Hi Ivan's Dad,

First of all I want to tell you I am a late deafened adult (my wife would argue about the Adult part so let’s not go there) and a very happy Cochlear Implant user. So please keep that in mind my comments are from a very satisfied patient’s perspective.

I find it sad that the implant team does not seem to be opening up to you; I know they are not allowed to promote one brand over another for ethical reason, but they should share honest opinions on the possible outcomes. You should consider seeking another opinion from a different team if that option is available to you. The decision to implant a child is huge and every parent only wants what is best for their kids we all know that, you also have to keep in mind should you proceed you need to have a very good relationship with that team, the Audiologist and Speech pathologists will be so very important to your son's outcome in the long run, and if you are not on the same page it will not help your son. You need to be able to trust them and if you are unsure of the information they are giving you ask direct questions if the answers are not what you need they may not be the team for your son - that sounds harsh but that relationship has to be excellent for thongs to work well for Ivan.

I can't give you specific numbers or any guarantees’ on outcomes with children (I don't believe anyone who would say they could) but generally speaking children do well with implants and the earlier they are implanted the faster they progress, that is not to say they will not do as well if implanted later just that they develop faster if implanted sooner. I am very active on several message boards and chat rooms for Cochlear Implants and hearing issues and I would have to say I have seen a few people in your position, it is scary, but the technology is sound, and the surgery techniques are well established so from a risk point of view it is not risk free but it is a very low risk procedure today.

I would never tell anyone they or their child should get a Cochlear Implant (I am not qualified that recommendation should only come from a CI Team) and I hate to see others who express strong opinions either way. This is a huge decision for you and your family, I know it is not an easy one so don't let any one person or message overtly influence you.

If you want to connect with a few of the parents I chat with drop me a personal message through this board I can contact a couple of them and put you together.

Best of luck to you and Ivan.

Regards
Mike "Ears Hopin" P
 
Hi Ivans dad, my daughters profound hearing loss was due to a malformed cochlea as well. She has Enlarged Vestibular Aquaduct. When Kayla got her implant 4 years ago, nothing was promised. Thank god everything is going great for her and her progress has been wonderful. When a CI is chosen, one of the first things they do is give you a cat scan to make sure it will be ok to receive an implant. I remember them telling me that if her cochlea was even the slightest bit more malformed then what it was, she would not of been able to receive the implant. It's a big decision and i know it's not an easy one. Good luck with everything.
 
Ivan's Dad,

Cochlear makes a special array designed for adults and children with Mondini. You might want to ask your CI center (or Cochlear) for more information.
 
Hi, I am the father of a deaf daughter who recently had her second ear implanted. She goes to Central Institute for the Deaf in St.Louis Mo. There are a few kids there that have the same type of diagnoses you described. Enlarged vestibular ducts. I know first hand of 3 kids there tha have benifitted from a CI. If your son loves his hearing aids, and is profound in one ear, what is keeping you from getting a CI in the profound ear, and keeping the HA in the otrher? A few months ago, I sat through an incredible forum at Barnes Hospital Washington University Medical Center in which they discussed bilatteral cochlear implantation and binauraul implantation. The bilateral is when both ears have been implanted, the binaural is when there is a hearing aid in one ear and a cochlear implant in the other.
The doctors are reluctant to tell you what to do because they cannot promise you anything. The results will vary for each kid. My advice is to do your research and make your own decision.
Dp your own research and form your own opinion. If you would like, I can send you the handouts that were provided from the forum I told you about.
 
Spock said:
Ivan's Dad, read about my own experiences and thoughts regarding the CI at:

http://www.alldeaf.com/hearing-aids-cochlear-implants/38326-i-am-mad-i-have-ci-sigh.html#post714527

To answer your questions regarding the Cochlear Implant team, that's clearly a sales pitch. I have two CIs but my speech never got developed to an extent that hearing people (even my own family) could understand me.[/QUOTE Did you go through a lot of audio verbal therapy? Also,did your parents work with you at home alot? I know that without this type of extensive therapy, the implant will not work. You also have to remember that you got your implant some time ago...technology and channels for the CI have gotten much better since then.
Click to expand...
 
Gigabyte said:
Hi Ivan's Dad,

First of all I want to tell you I am a late deafened adult (my wife would argue about the Adult part so let’s not go there) and a very happy Cochlear Implant user. So please keep that in mind my comments are from a very satisfied patient’s perspective.

I find it sad that the implant team does not seem to be opening up to you; I know they are not allowed to promote one brand over another for ethical reason, but they should share honest opinions on the possible outcomes. You should consider seeking another opinion from a different team if that option is available to you. The decision to implant a child is huge and every parent only wants what is best for their kids we all know that, you also have to keep in mind should you proceed you need to have a very good relationship with that team, the Audiologist and Speech pathologists will be so very important to your son's outcome in the long run, and if you are not on the same page it will not help your son. You need to be able to trust them and if you are unsure of the information they are giving you ask direct questions if the answers are not what you need they may not be the team for your son - that sounds harsh but that relationship has to be excellent for thongs to work well for Ivan.

I can't give you specific numbers or any guarantees’ on outcomes with children (I don't believe anyone who would say they could) but generally speaking children do well with implants and the earlier they are implanted the faster they progress, that is not to say they will not do as well if implanted later just that they develop faster if implanted sooner. I am very active on several message boards and chat rooms for Cochlear Implants and hearing issues and I would have to say I have seen a few people in your position, it is scary, but the technology is sound, and the surgery techniques are well established so from a risk point of view it is not risk free but it is a very low risk procedure today.

I would never tell anyone they or their child should get a Cochlear Implant (I am not qualified that recommendation should only come from a CI Team) and I hate to see others who express strong opinions either way. This is a huge decision for you and your family, I know it is not an easy one so don't let any one person or message overtly influence you.

If you want to connect with a few of the parents I chat with drop me a personal message through this board I can contact a couple of them and put you together.

Best of luck to you and Ivan.

Regards
Mike "Ears Hopin" P
Click to expand...

Hi Gigabyte! I know you from the Hearing Exchange chatroom (I'm Lucia)...welcome to AD!
 
Ivan's dad,

Who is the one that told you he was a candidate for a CI? I'ts my understanding (and someone please correct me if I am wrong) that if there is progress with HA's then they are not candidates for a CI. I can tell you from experience that whomever told you all people that get CI's learn to speak is full of crap.

We had to make the decision for our child whom had a malformed choclea as yours does. In our case the malformation caused CSF leak and he contracted menengitis as a result. The ear with the leak and malformation had to be packed in order to prevent the possibility of re-infection of the deadly bacteria. So he will never be able to hear (assisted or not) from that side. The other ear was a candidate per the doctors. I too asked for statistics on success rates and was not provided with them. Just general terms. His other ear had ossification setting in. That is where the choclea turns bony as a result of the menengitis (as we were told) which makes success drop drastically and may even prevent successful implatation. So we were pressed to make a decision as the window of opportunity was closing rapidly. The first implant was not put in properly due to the doctor misreading an Xray. The second was supposidly implanted properly but there was no benefit from it.

Are both chocleas malformed? If only one then is it the ear with the profound loss? Here is a very important consideration. Depending on the severity of the malformed choclea, that ear may or may not be a candidate. If they are talking about implanting in the ear with the good coclea, there is no turning back. If it fails (as it did in our case), there is no hope for HA's or any residual hearing from the ear that is implanted. Most likely the ear with the malformation is not capable of any hearing be it residual or assisted. So if the ear with the malformation is not capable of hearing nor is it a candidate for an implant, you will be taking a chance on the other ear. Once implanted and if the implant has no benefit, there is no longer any hope for residual hearing or HA's which would leave your child in a total world of silence. I'm not saying living in a world of silence is a bad thing but it's something that you may want to consider. Another thing to consider is the opinions and attitudes of some deaf that feel they were forced by their parents to be implanted without any say in the matter. Some feel resentment towards their parents. Just read through some of the threads here in the CI section and you will hopefully get a feel for what I am talking about.

I know it's not an easy decision and I wish you all the best. If I can share any additional information with you please PM me and I will be happy to discuss my experience in further detail.
 
Gigabyte,

It's good to see you posting! :) You and I know each other from the CIHear forum. (Take a look at my signature below and you'll recognize me. :))
 
Ivan's Dad,

Here's an article about a child with congenital severe-profound hearing loss, Mondini and Enlarged Vestibular Aquaduct Syndrome (EVAS). She received a CI at 5 1/2 years old and is doing very well.

Michaela (age 8.5 years) has a Cochlear Implant

Michaela (age 8.5 years) has a Cochlear Implant
2/17/2003

Hi, my name is Brenda, I'm the mother of an 8 and a half year old hearing impaired girl named Michaela. Michaela was born with severe-profound bilateral hearing loss, which was diagnosed at 18 months of age. Michaela has Mondini's (cochlear dysplasia) and she has Enlarged Vestibular Aquaducts as well. Both conditions put her at a higher risk for a progressive loss.

When she was first diagnosed with hearing loss, she was fitted with hearing aids and plunged into an auditory oral program and later auditory verbal pre-school with therapy sessions.

When she was 5 1/2 years old we decided to go ahead with the cochlear implant.

After careful consideration and research we decided on the MED-EL device. We had many reasons for choosing this brand. Some of them were:

1-We liked their straight forward approach to the CIS strategy.

2-We liked the availability of the BTE and the battery life.

3-We liked that if she needed an MRI she could get one without removal of the device.

4-We liked the compressed array option. She may have needed this due to her Mondini's deformation. However, her doctor was able to insert the regular array. She had just barely enough cochlea.

5-MED-EL responded quickly when I emailed with questions. We had access to their studies not just the marketing material.

6-We liked the re-boot capability. We have never had to repair a scrambled map. She's never had one!

She is now going into third grade and attends the regular, public school. She has been wearing her implant for almost three years!

Michaela is active in all aspects of life. The implant has helped develop her confidence. She is in dance, gymnastics, played t-ball and sings in our church children's choir.

All in all we are extremely happy with our decision and with her progress with the implant so far. She has pretty much made up for the lost listening time when we didn't know she couldn't hear.

This makes us feel really good!

Sincerely,

Brenda W.
 
More info

Rockdrummer: Both of Ivan's cochlea have similar deformations. If we were to proceed with the implant it would be in his profound ear (left) and he would continue to use his HA in his right.

We were told that only a couple of years ago Ivan would not have been a candidate but since the results of implanting younger and younger children seem to indicate a greater advantage, they are becoming less strict on their candidacy requirements.

They seem to encourage parents to jump into this decision using the argument that the younger the better but there is no long term study to back this up.


Kayla123: Follow up after the implant is another of our big concerns. We wonder how much time the training will take. Sign language seems to come very naturally to Ivan. It is difficult for us but it is something we can see results from and we know we are getting better everyday.

We live in a rural setting on an island and there are no schools for the deaf or speech patholigists with experience with a child like Ivan.

I am so happy to hear that your daughter is doing well with her implant. Do I understand right that you and your daughter have implants?

How old were you when you got your CI and did you do much training?


Spock: The points you make, from your perspective is what makes our decision the hardest. Thank you very much for bringing my attention to your story.

Whatever we decide to do, the reality of it is, that Ivan will have to live with that decision for the rest of his life, for good ....... or bad.


Lillys Dad: How is Lilly doing with her implants? I hope she is learning well! Ivan does not have Enlarged vestibular ducts. Only half of the Cochlea is formed but it is of normal size (I believe).

Quote "The doctors are reluctant to tell you what to do because they cannot promise you anything. " That is a big thing.


Hear Again: I will look into that custom array. Our Doctor says that he intends to use a normal array though (which I find strange).


Gigabyte: Did you try HA before choosing an implant?


I would love to hear from any other hearing parents who choose not to implant their children in the past few years?


Thank you all for your input!
 
Hi Ivan's Dad,

My sister who is hearing chose not to implant her child 14 years ago, mainly because of the question marks that you yourself have raised but also she was concerned about the surgery and it all seemed too hard.

Today my nephew is very proficient in BSL (British Sign) and all of his friends are deaf and he attends a residential deaf school. He has done well in scientific subjects and okay in English. In the deaf world he is very happy and relaxed but is anxious if there is any incursion into the hearing world. He is getting to the point where he is going to leave school and unfortunately he doesn't want to do anything that involves interaction with hearing people or going into a hearing environment. There isn't a Galluadet type college in the UK. He stonewalls any discussion about careers, which frustrates my sister.

The other issue is that he lost a lot of his friends over the years when they left his school to go to oral deaf schools due to the low educational standard there generally. This has been hard for him. He hasn't been able to follow them as he has no lipreading or oral skills, whereas they do have some oral skills.

So in his own environment he is very happy. So it's a mixed bag really and you will find that also if your child has a CI but with different issues mixed in.

The very fact that you have a deaf child means that his life is not going to be straightforward and perfect whatever path you choose.

We can't tell you what to do. Only you can make that choice yourself. I think the fact that your son has a caring and loving parent already gives him a huge head start.
 
Ivan's Dad said:
They seem to encourage parents to jump into this decision using the argument that the younger the better but there is no long term study to back this up.
Click to expand...

Just wanted to ask you what you meant by this? It's my understanding that there is a considerable body of research that does indicate that the younger the better one does with a CI. If you do a search on Entrez Pubmed you'll find these medical journals.

Or are you saying long term as in from 1 years to 20 years sort of thing?
 
rockdrummer said:
Who is the one that told you he was a candidate for a CI? I'ts my understanding (and someone please correct me if I am wrong) that if there is progress with HA's then they are not candidates for a CI.
Click to expand...

I don't know about implantation of young children, but I'm currently a candidate from an audiological perspective (going through the surgical eval now), even though I get benefit from hearing aids; I'd get more benefit from a CI. I know several other people for whom this is also the case (all in the 15-30 age range). As kayla said, as CIs get better, the number of people who could potentially benefit from one increases.
 
Ivan's Dad,
Welcome.

I noticed you allready got a lot of good information - with views of both sides of the decision.

Myself, I am the father of a girl that has bilateral CI. Hear cochlea is fine, so I cannot share personal experience regarding this.

When your son is hearing with HA's then this should not be taken away. In that sense, the other ear would be a good candidate. LilliesDad has good info on it. (And recent)

But Rockdrummer does have experience from the other side, and if this is related to the deformed cochlea, this should be taken in consideration as well.

But before all this,
What is the progress of your son, speechwise. And what does he really hear.??
What is his discrimination across the frequency scale. Is the deformed cochlea preventing sounds fro being heared??
In that case I can imagine that stimulation of the cochlea might give the same results...

Sorry if I confuse the matter even more...

Again, welcome..
 
Ivan's Dad said:
.......We were told that only a couple of years ago Ivan would not have been a candidate but since the results of implanting younger and younger children seem to indicate a greater advantage, they are becoming less strict on their candidacy requirements.

They seem to encourage parents to jump into this decision using the argument that the younger the better but there is no long term study to back this up.....
Click to expand...
I can imagine there is a tendency to put some pressure on people BECAUSE studies have shown that ealy implantation IS preferable.
However, this would (I guess) apply for children with normal cochlea. Your child might fall out of the category.

I'll be happy to send you some links... if I can find them. I downloaded many articles to the harddisk.... but I should be able to find the link..
 
Ivan's hearing

Cloggy,

The level of his hearing is certainly a factor in our decision. His hearing is quite good compared to many children with mondini. He is better with the higher frequencies than the low which is also different than most hearing losses. It is my understanding that the higher frequencies are more important in learning language. His aided augiogram shows that he can percieve a little more than half of normal speech.

We are at times are shocked at what he seems to understand with his HAs. The other day, while changing his diaper, my wife was singing a song from a movie. Right after, Ivan ran to the TV and put that movie on.

It has been only a year since he has gotten his HA and we certainly don't know what we are doing when it comes to teaching him how to listen and speak but we are trying. We wonder if he would be using his voice more if we had better local support.

How long should we wait before Ivan show's results in his oral skills? All kids learn differently. We know that he is the sort of kid that doesn't try to do something until he knows he can do it and then he just does it with very little practice.

R2D2: It is my understanding that it is only recently that they have started the widespread implantation of very young children. (5 years or so).

I would like to believe that giving Ivan an implant in his left ear would be the best for him but dispite all the wonderful success stories, we are still very reluctant.
 
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