New to site. Baby with hearing loss.

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kjvitek

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I am new to this site, and just joined today. This site has come up several times in searches I have done, and has been helpful. I thought I would tell my story and see if there is anyone who has a similar story or encouraging words.
My daughter is now 5 months, and was born with a hearing loss, as well as facial nerve palsy. She has failed several hearing tests since birth. So this along with the nerve palsy, required us to have an MRI and Cat Scan. She has no cochlea on the left side, and only a small bud on the right. No auditory canals on either side. After no conclusive hearing tests, we just had a sedated one last friday. So as of currently I have been told that she has hearing on both sides at 105-115 decibels. I am confused about this bc I was told she has no cochlea so I dont know how she can hear at even that level. Maybe I dont understand the hearing process? Next week we have an appointment for hearing aids. Does anyone know how well hearing aids could work for her being that profound? Also, the drs have said there may be a possibility in the future for CIs if there is a place to put them (no cochlea's) Any thoughts?? thanks for any input, I am new to this and just want the best for my precious daughter!
 
kjvitek said:
I am new to this site, and just joined today. This site has come up several times in searches I have done, and has been helpful. I thought I would tell my story and see if there is anyone who has a similar story or encouraging words.
My daughter is now 5 months, and was born with a hearing loss, as well as facial nerve palsy. She has failed several hearing tests since birth. So this along with the nerve palsy, required us to have an MRI and Cat Scan. She has no cochlea on the left side, and only a small bud on the right. No auditory canals on either side. After no conclusive hearing tests, we just had a sedated one last friday. So as of currently I have been told that she has hearing on both sides at 105-115 decibels. I am confused about this bc I was told she has no cochlea so I dont know how she can hear at even that level. Maybe I dont understand the hearing process? Next week we have an appointment for hearing aids. Does anyone know how well hearing aids could work for her being that profound? Also, the drs have said there may be a possibility in the future for CIs if there is a place to put them (no cochlea's) Any thoughts?? thanks for any input, I am new to this and just want the best for my precious daughter!
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I am also a hearing parent of a Deaf child. My little one was diagnosised at 18 months old.

Ok, first the hearing test. I would guess that she is not reacting at 115 db, but that is just the highest they can test. The sedated test is called an ABR.

If she desn't have a cochlea, she can't be a CI candidate. If she has a malformed cochlea, she might be, but things wil be tougher and the expectations would be much lower. A hearing aid in the ear with a cochlea would be the safest bet, but I don't know what kind of benefit she will get from it.

My daughter is a native American Sign Language user. When we discovered her loss, we began learning it and using it with her. We had a Deaf mentor come from our Early Intervention program come every week and teach us signs. It was the best decision we ever made. She was able to communicate with us and understand us without having to wait (and hope) that she would learn to speak.

I would contat your local Early Intervention program, nearest School for the Deaf, and find a good pediatric audiologist.

Good luck, and congrats on the gift of your sweet new baby!!
 
Thank you. Her one side has hearing at 105, and the other 110. On two of the tests she has had there have been consistencies as low as 90. I have begun to learn a few signs to work with her. We have the Regional Infant Hearing program helping us monthly and I feel that she has the best set of doctors available. We are going to the Cleveland Clinic and everyone seems optimistic. I think I want to sign with her wether she gets CI or not. I dont see why it needs to be one way or the other, I just want whats best for her. I appreciate your comment, its nice to know it will all turn out well!
 
Feel free to check out my blog

Miss Kat's Deaf journey

It is about our journey so far. (The newest posts are at the top, so you'll have to go back to get the whole story)

We started with "Signing Time" videos (Watch for Miss Kat in "Eating Time", she signs spoon, cup and napkin) and then just got more and more advanced.

Good luck!
 
As a late deafened person of deaf parents I would also advocate learning signs along with your baby... the Signing Time videoes are well worth the investment and make (learning) communication in ASL for both of you (and your husband) a fun game ... later as she gets older a lot of frustration will not be as great as there is communication to wants/needs and etc. as she will be able to express herself and you to her.
Personally I am against CI's for such young children... I view them as un-necessary and in some ways depriving the child of her rightful deaf-heritage into which she was born. There may be some who will disagree but that's for them to say.
However you choose learn signs with her anyway. She'll thank you for it.
 
I'm just guessing here but maybe she can hear the 105-110 dB because of vibrotactile perception?
 
Welcome to AD. :) I applaud you for looking at all options for your daughter. What you learn will help you make an educated decision that is truely best for your situation. And congrats on your precious babygirl. :D
 
DeafCaver said:
As a late deafened person of deaf parents I would also advocate learning signs along with your baby... the Signing Time videoes are well worth the investment and make (learning) communication in ASL for both of you (and your husband) a fun game ... later as she gets older a lot of frustration will not be as great as there is communication to wants/needs and etc. as she will be able to express herself and you to her.
Personally I am against CI's for such young children... I view them as un-necessary and in some ways depriving the child of her rightful deaf-heritage into which she was born. There may be some who will disagree but that's for them to say.
However you choose learn signs with her anyway. She'll thank you for it.
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My daughter is "big d" Deaf and she has a CI. A ci has nothing to do with cultural affiliation. It is simple a tool to help someone hear.

Ignore the anti-CI people, and do what is best for your child.
 
kjvitek said:
I am new to this site, and just joined today. This site has come up several times in searches I have done, and has been helpful. I thought I would tell my story and see if there is anyone who has a similar story or encouraging words.
My daughter is now 5 months, and was born with a hearing loss, as well as facial nerve palsy. She has failed several hearing tests since birth. So this along with the nerve palsy, required us to have an MRI and Cat Scan. She has no cochlea on the left side, and only a small bud on the right. No auditory canals on either side. After no conclusive hearing tests, we just had a sedated one last friday. So as of currently I have been told that she has hearing on both sides at 105-115 decibels. I am confused about this bc I was told she has no cochlea so I dont know how she can hear at even that level. Maybe I dont understand the hearing process? Next week we have an appointment for hearing aids. Does anyone know how well hearing aids could work for her being that profound? Also, the drs have said there may be a possibility in the future for CIs if there is a place to put them (no cochlea's) Any thoughts?? thanks for any input, I am new to this and just want the best for my precious daughter!
Click to expand...

I am the mother of a profoundly deaf son who was also diagnosed shortly after birth. Just to clarify a bit on the "hearing at 105-115 dB." question. At that decibel level, it is entirely possible that your child is not "hearing" sound as you, a hearing person, would perceive hearing to be, but simply reacting to vibration. The louder the dB level, the more readily the vibration is felt. Especially at your child's age, it cannot be determined whether the child is actually "hearing" or simply perceiving the sound through another sensory channel.

I say fit the hearing aids, and begin learning ASL so that your child will be exposed to language from early on. The most important thing at this point is that she receives language in a mode that will allow her to develop cognitively on schedule.

And congratulations on turning to the deaf community. I can assure you that they will be your greatest resource for information that is both realistic and pertinent to a deaf child.
 
CJB said:
I'm just guessing here but maybe she can hear the 105-110 dB because of vibrotactile perception?
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Excellent guess. Like I said, the deaf community will be this parent's greatest resource. The medical community says the child "hears" at this level, the deaf community is able to break it down to "No, we feel at that level."
 
I would think that the eardrums would be buzzing at 110 dB, and the sensation would be what the child is reacting to; not a sound, but to pain or a tickling feeling. I know in my right ear, I experience pain at that level of sound, but in no way could I understand someone's speech.

I agree with those that tell you to learn ASL and work with the child to develop language skills. Most deaf are much more comfortable with signing, even after CI surgery. Any hearing aids you get will probably not offer the hearing level required for oral conversation. Just my opinion.

Good luck with your decisions. There will be many opinions given here, also at other threads throughout this site. Do what you think is best for YOUR FAMILY, regardless of the bickering that sometimes occurs between the CI fans and CI foes.
 
Today I came across a young girl with bilateral CI's. She didn't any know sign at all. :( :( In my opinion, CI or no CI, every deaf child should have access to sign language.
 
CJB said:
Today I came across a young girl with bilateral CI's. She didn't know sign at all. I think CI or no CI, every deaf child should have access to sign language.
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I agree!
 
With only a tiny portion of one cochlea present, only the most avid pusher of CI would urge you to try one.

ASL will be the best route without doubt for this child.
 
Thank you everyone for your thoughts. I will do the best I can to decide what is right for her. Im sure as you know it just gets a little confusing with all of the information thrown at me. And since I can hear, I dont always know what to think of it.
 
kjvitek, congratulations on the birth of your baby girl! What a blessing! As a mom, you will love your little girl and nurture her. That's the most important thing any mom can do. You will sort all of the other issues out over time. Enjoy getting to know her and watching your little girl grow. They all grow up too fast for mamas.
 
I think I want to sign with her wether she gets CI or not. I dont see why it needs to be one way or the other, I just want whats best for her.
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Excellent! Contact your state's School for the Deaf, as well as its Association for the Deaf. You need EI resources specificly for dhh kids. NOT " general" EI. (the kind that is offered to kids with mental retardation and issues like autisim or CP) What kind of audi are you seeing? If you're seeing a " general" audi maybe go and see one at a school for the deaf or who is affliated with a pediatric ENT?
I also thought that kids without coaclas were eligable for the auditory brainstem implant?
 
Her Audiologist does work with a pediatric ENT. They have mentions the Auditory Brainstem implant, but they said it would not be an option until age 12. And to be honest, it makes me feel a little uncomfortable. I dont know a lot about it, just because it is near the brain. And also, I feel like by the time she is 12 years old she may be happy with where she is. Does anyone know of anyone else who doesnt have cochlea's? I havent come across this in my searches and I am curious about it.
 
kjvitek said:
Her Audiologist does work with a pediatric ENT. They have mentions the Auditory Brainstem implant, but they said it would not be an option until age 12. And to be honest, it makes me feel a little uncomfortable. I dont know a lot about it, just because it is near the brain. And also, I feel like by the time she is 12 years old she may be happy with where she is. Does anyone know of anyone else who doesnt have cochlea's? I havent come across this in my searches and I am curious about it.
Click to expand...

I think maybe our member Whisperhorse. But she is not here often.
 
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