Ci's For My Baby

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MAG

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Hey everyone,
I just discovered this forum last night searching the web trying to figure out the best type of CI's for my baby. Surgeons and audiologists can talk all about the different aspects of them, but I figure the best people to ask are those that actually wear them.

A little background on my baby:
My baby failed all 3 of her newborn screenings and once we had her sedated ABR realized she had profoundly hearing loss in both ears. Since then we have had a CT scan, 2 MRI's, countless blood draws, and a spinal tap trying to figure out what caused this and if it is something that can progress to other parts of her body. We've been to doctors all over the country, but no one seems to be able to figure it out.
Anyways...long story short, the ENT thinks there may be inflammation in her cochlea and it may progress to the point that the cochlea may calcify making pacing a CI electrode in there impossible. So now we are rushing to have her surgery before we miss our window of opportunity. She will be about 5 months when they implant her at the end of this month.
Now my biggest concern is giving my daughter the best range and quality of hearing with the CI's. Ive been reading enough to know that some people with cochlear vs. medel vs AB have different hearing (music, low frequency sounds).

I was hoping to get your input/recommendations on one over the other. AB is out of the picture because of the size of the internal component. So it's really between Medel and Cochlear.

One of my biggest concerns is reading about Cochlear CIs, they seem to have different settings for different types of environments. This would be very difficult for a child to manage. Is this something Cochlear users face? My understanding is that Medel switches its settings automatically.

Another component is the waterproof aspect of it. Cochlear offers the waterproof case which would allow her to hear while swimming. Medel seems to be behind in that.

A lot of people write on their experiences based on having hearing, then losing it, and then having CIs. So I really appreciate the comparisons they write about.
She does have some hearing now (65dB) and wears hearing aids, but I don't know, with her being implanted so young, she would have any memory of sound.

Thanks in advance for your help!
Im pretty confused and would love some guidance!!!!
 
MAG said:
Hey everyone,
I just discovered this forum last night searching the web trying to figure out the best type of CI's for my baby. Surgeons and audiologists can talk all about the different aspects of them, but I figure the best people to ask are those that actually wear them.

A little background on my baby:
My baby failed all 3 of her newborn screenings and once we had her sedated ABR realized she had profoundly hearing loss in both ears. Since then we have had a CT scan, 2 MRI's, countless blood draws, and a spinal tap trying to figure out what caused this and if it is something that can progress to other parts of her body. We've been to doctors all over the country, but no one seems to be able to figure it out.
Anyways...long story short, the ENT thinks there may be inflammation in her cochlea and it may progress to the point that the cochlea may calcify making pacing a CI electrode in there impossible. So now we are rushing to have her surgery before we miss our window of opportunity. She will be about 5 months when they implant her at the end of this month.
Now my biggest concern is giving my daughter the best range and quality of hearing with the CI's. Ive been reading enough to know that some people with cochlear vs. medel vs AB have different hearing (music, low frequency sounds).

I was hoping to get your input/recommendations on one over the other. AB is out of the picture because of the size of the internal component. So it's really between Medel and Cochlear.

One of my biggest concerns is reading about Cochlear CIs, they seem to have different settings for different types of environments. This would be very difficult for a child to manage. Is this something Cochlear users face? My understanding is that Medel switches its settings automatically.

Another component is the waterproof aspect of it. Cochlear offers the waterproof case which would allow her to hear while swimming. Medel seems to be behind in that.

A lot of people write on their experiences based on having hearing, then losing it, and then having CIs. So I really appreciate the comparisons they write about.
She does have some hearing now (65dB) and wears hearing aids, but I don't know, with her being implanted so young, she would have any memory of sound.

Thanks in advance for your help!
Im pretty confused and would love some guidance!!!!
Click to expand...
5 months old at age of implantation? Is this a trolling post? Where are you that you found a surgeon willing to implant a five month old? Who is this doctor?
 
This isn't a troll, please take time to read the whole post before replying and unless you have an MD at the end of your name, you're really in no position to judge.
Her cochlea may calcify and that the reason for implanting early. This is done in children who have meningitis as well.
 
Nasty...
DONT DO IT!!

5 months old..
Mmmm

Nasty
 
Most deafies are other against cI and/or baby child implants. They are drilling a hole the size of a quarter into theirs heads. Place a quarter on your babies head just above and behind the ear. I have 3 kids, one is almost 2 months old, and a quarter size is just to big. I am not telling you not to do it. It is your child and in the end 'your' decision. But I couldn't do a surgery that extreme on my baby. Lately I have been to afraid to take my babies to the dentist with all these young children dying during simple surgeries.
 
Thanks for your input DeafNerdMommy
The surgeon who will be doing the surgery does not drill into the skull but places the implant right on top of the bone minimizing risk.
My husband and I are both doctors so we know the risk we are taking in putting her through this procedure.
We also know the advantages it will have in her speech development as studies show children implanted before the age of 2 have better outcomes.

Again, if the inflammation was not an issue, we wouldnt be doing it so soon.
I understand everyone has their own opinions on what to do, but his post wasn't to ask whether or not to do it. We have already made that decision.
It is to get input from CI users on the brands.

Also, not taking your child to see the dentist because of fear of what may happen is a very backwards way of thinking. The whole purpose of regular visits is to prevent or catch anything happening early. You go to the professionals (be it dentist, ent surgeon, whatever) and get their opinion, and then make an informed decision. Nobody is forcing you to do anything. But by not going, your putting your children's oral health on the line. And who knows, maybe they have perfect teeth.
 
MAG, you need to realize that this is a deaf/Deaf forum. Many here do not believe kids, or adults, NEED to be able to hear. So, you will get what you consider to be negative feedback.

I hope you have begun learning ASL and teaching it to your baby.
 
I am not neglecting to take them to the dentist, I just feel operations for them. I was in and out of an operating room as a child.for my ears. Got my first surgery when I was 7 on my ear drums. It did end up damaging my earing more with each surgery and now I can't have anymore because my ear drums are to scared. What I don't understand is they are just placing it on the bone, but how do they get the transmitters down into the cocd learn? That is the point to drilling.
 
Whether or not you get your child a CI, you should teach your child sign language.

They will still be deaf, and ironically, you make them even more deaf by trying to "fix" the deafness because the auditory nerve is severed from the cochlea. Make sure you teach them sign language so when the CI is off they still communicate (Example: While swimming or playing sports), and so they can communicate with other Deaf and hard of hearing people. Don't make them rely on it, teach them to be confident in their own deafness.

In my own personal belief I feel that the person getting implanted should decide to get the implant when they are able to pay for it themselves, unless it is somehow medically necessary.
 
MAG said:
Thanks for your input DeafNerdMommy
The surgeon who will be doing the surgery does not drill into the skull but places the implant right on top of the bone minimizing risk.
My husband and I are both doctors so we know the risk we are taking in putting her through this procedure.
We also know the advantages it will have in her speech development as studies show children implanted before the age of 2 have better outcomes.

Again, if the inflammation was not an issue, we wouldnt be doing it so soon.
I understand everyone has their own opinions on what to do, but his post wasn't to ask whether or not to do it. We have already made that decision.
It is to get input from CI users on the brands.

Also, not taking your child to see the dentist because of fear of what may happen is a very backwards way of thinking. The whole purpose of regular visits is to prevent or catch anything happening early. You go to the professionals (be it dentist, ent surgeon, whatever) and get their opinion, and then make an informed decision. Nobody is forcing you to do anything. But by not going, your putting your children's oral health on the line. And who knows, maybe they have perfect teeth.
Click to expand...

Well their is more to this then simply judging how well speech is acquired.
You understand that right

Besides promised snake oil re high tech and drills have you and your husband considered sign which is the superior technology. We have a vibrant and strong culture. We have our language. It's your child as deaf birth right to be offered what we offer her.
Not just a drilled hole int he head and high tech illusions.

It's easy for you I figure due to your work to be taken with what the promise of tech offers.
Sign is superior

So you came on the forum why?

Your mind seems already made up
WhT branch of medicine is your practice in?
 
Salma, I don't think you are aware of the anatomy in that region. The auditory nerve is not severed, that still needs to be intact for the CI to work. If the auditory nerve doesn't work, then there is no point in doing this whole procedure.
CI's can be worn while swimming and playing sports.

I'm definitely not ashamed of my daughters deafness. I'm trying to give her opportunities that may not be available when she is older, which i have already stated before, may not be possible because once the cochlea calcifies you can't put an electrode in there, which would not make her a candidate for CIs anymore. If she decides in the future she doesn't want to wear them anymore, she has the freedom to do that.

I do agree with you she needs to learn sign language, and we are already working on that.
 
DeafNerdMommy said:
I am not neglecting to take them to the dentist, I just feel operations for them. I was in and out of an operating room as a child.for my ears. Got my first surgery when I was 7 on my ear drums. It did end up damaging my earing more with each surgery and now I can't have anymore because my ear drums are to scared. What I don't understand is they are just placing it on the bone, but how do they get the transmitters down into the cocd learn? That is the point to drilling.
Click to expand...

Im very sorry to hear you had such a bad experience. I can see why that would scar you and turn you off to any kinds of surgeries.
The quarter size drilling you are talking about is made to place the receiver almost like a seat for it. The leads of the implant are then "threaded" through 2 windows in the cochlea that occur naturally and down into the "spiral". This is a simple explanation. Im sure its very complicated once you get in there.
Of course this all depends on the surgeons experience and optimal conditions so every case is different.
In my daughter's case, he will not be drilling the quarter size trough so i will be able to feel the implant under her skin, not a big deal.
 
I'm not a CI user (born profoundly deaf and use hearing aids...), but I'm curious... you stated that her cochleas may calcify in the future; because it sounds like that's not a concrete thing nor following any kind of timeline (months? year?), I'd be concerned that even if you use a CI NOW, could it be possible that the CI will cease to function when/if the cochlea calcifies? Something to think about too. I'd hate to put time and money into it when there's a real possibility that it will fail down the line.

I'm open to learn about the cochlea as calcification of the cochlea is new to me. I've heard of underdeveloped, missing ones but never a calcified one.
 
Curious... have stepped outside of the whole doctorates aspect and looked at your child as a person and not something to be cured?
Regardless of what you do, she will always be deaf. Have you went and talked with others who have been implanted as a baby/child? Also, what about being so young and unable to communicate, her head is pounding from a migraine or is it something else?
Why the rush to "fix" some who is not broken, just does not fit into you medical normal?
 
For such a drastic procedure. You should wait and let your child decide. When she's old enough too if she wants it or not. Rather then having it forced on her against her will.

It is her head.

Sign will set her free. Not products designed to rid the world of people like us.

You need to be aware that many many many implanted children do not have the results promised.

The ci companies and the surgeon are not in the best interest of your child. They are their to sell you a product
I strongly recommend you don't fall for it.

Which opportunities!
Besides speech...which is their only damn measure....

What your child needs is other Deaf and sign

Not products hawked by multi nationals...against her best interests
 
hoichi said:
For such a drastic procedure. You should wait and let your child decide. When she's old enough too if she wants it or not. Rather then having it forced on her against her will.

It is her head.

Sign will set her free. Not products designed to rid the world of people like us.

You need to be aware that many many many implanted children do not have the results promised.

The ci companies and the surgeon are not in the best interest of your child. They are their to sell you a product
I strongly recommend you don't fall for it.

Which opportunities!
Besides speech...which is their only damn measure....

What your child needs is other Deaf and sign

Not products hawked by multi nationals...against her best interests
Click to expand...




duly noted.
 
MAG said:
Thanks for your input DeafNerdMommy
The surgeon who will be doing the surgery does not drill into the skull but places the implant right on top of the bone minimizing risk.
My husband and I are both doctors so we know the risk we are taking in putting her through this procedure.
We also know the advantages it will have in her speech development as studies show children implanted before the age of 2 have better outcomes.

Again, if the inflammation was not an issue, we wouldnt be doing it so soon.
I understand everyone has their own opinions on what to do, but his post wasn't to ask whether or not to do it. We have already made that decision.
It is to get input from CI users on the brands.

Also, not taking your child to see the dentist because of fear of what may happen is a very backwards way of thinking. The whole purpose of regular visits is to prevent or catch anything happening early. You go to the professionals (be it dentist, ent surgeon, whatever) and get their opinion, and then make an informed decision. Nobody is forcing you to do anything. But by not going, your putting your children's oral health on the line. And who knows, maybe they have perfect teeth.
Click to expand...

Don't completely discount AB. I choose them partly because the internal component is rated to 6 joules while the others are much less. This means a errant baseball directly hitting the implant won't break it.
The internal part is also full of unused memory so that it can be upgraded with new software for decades.
 
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