Some babies born deaf aren't deaf after all! Don't rush CI!

deafdude1

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Some children who are born deaf recover from their deafness

Clinical research conducted in the Department of Communication Disorders at the University of Haifa revealed that some children who are born deaf "recover" from their deafness and do not require surgical intervention.

To date, most babies who are born deaf are referred for a cochlear implant. "Many parents will say to me: 'My child hears; if I call him, he responds'. Nobody listens to them because diagnostic medical equipment did not register any hearing. It seems that these parents are smarter than our equipment," said Prof. Joseph Attias, a neurophysiologist and audiologist in the Department of Communication Disorders at the University of Haifa, who made the discovery.

There are two causes of congenital deafness among children. One is the lack of hair cells, receptors in the inner ear that convert sounds into pulse signals that activate the auditory nerve. The second cause is a malfunction of the nerves. A child may be born with what appears to be a normal inner ear, but the hair cells do not "communicate" with the auditory nerves and the child cannot hear. To date, doctors have recommended the same treatment for all children born deaf. Once a child has been diagnosed as deaf, doctors recommend a cochlear implant, a surgically- implanted electronic device that bypasses the hair cells and directly stimulates the auditory nerve. Prof. Attias stresses that a cochlear implant is an excellent treatment for children with congenital deafness whose hearing does not improve over time. However, it appears that some children are born with "temporary deafness" a condition previously unidentified.

This discovery, like other revolutionary discoveries, was made by chance. A child who was born with malfunctioning hair cells and was scheduled for a cochlear implant was referred to Prof. Attias for a pre-surgical evaluation. The evaluation found that the child's brain and auditory nerves exhibited beginning responses to sound stimuli. The surgery was postponed. Follow-up visits showed increasing function of the hair cells and eventually the child reached a state of normal hearing. Prof. Attias, who is part of a cochlear implant team at Schneider Children's Medical Center, looked in the department archives and found other, similar cases. "Because these children go through a series of tests and evaluations by different doctors, a process that often takes months, there are cases of children who were initially referred for the procedure who didn't have it done. Sometimes parents decide not to do the surgery; sometimes they do it elsewhere. I called parents and found another seven cases of children who were diagnosed as deaf, did not have the procedure done, and began to hear," said Prof. Attias.

Prof. Attias then found another five children who had been referred to him for pre-operative testing who had begun to hear. At the end of his clinical research, he identified a "window of opportunity" of 17 months during which deaf children may begin to hear. "A child whose deafness is caused by a malfunctioning connection between hair cells and the auditory nerve should not have a cochlear implant in the first 17 months of life. Research results show the possibility that at least some of these children undergo the procedure for nothing," explained Prof. Attias.

He added that some of the children only develop partial hearing, which can be augmented with external hearing aids. Prof. Attias is now researching "temporary deafness" among young children, looking to find a way to identify those who will recover and those who will not.

My comments Can you imagine how upset that child will be when he grows up and learns he was forced a CI for nothing? Theres other reasons besides the one in the article why one should wait as long as possible to evaluate all options.
 
AN is a reason that a child would have a non responsive ABR, but appear to hear.

There is always a trial of hearing aids before an implant.
 
On the other hand...........AN is dx easily with a test right? I forget exactly what happens.....
And there's also been cases where a kid is tested as having a profound loss on ABR, but more of a hoh (helped with hearing aids) loss on more traditional testing.
It happened to me. Always identified as hoh, and my audiogram indicated that I was hoh. Couple of years ago I got an ABR......which showed I was DEAF!
 
On the other hand...........AN is dx easily with a test right? I forget exactly what happens.....
And there's also been cases where a kid is tested as having a profound loss on ABR, but more of a hoh (helped with hearing aids) loss on more traditional testing.
It happened to me. Always identified as hoh, and my audiogram indicated that I was hoh. Couple of years ago I got an ABR......which showed I was DEAF!

Actually, I think that AN is extremely complicated and if not found very young (when the OAE's are still present) sometimes is never diagnosised.
 
whats AN?

What is auditory neuropathy?

Auditory neuropathy is a hearing disorder in which sound enters the inner ear normally but the transmission of signals from the inner ear to the brain is impaired. It can affect people of all ages, from infancy through adulthood. The number of people affected by auditory neuropathy is not known, but the condition affects a relatively small percentage of people who are deaf or hearing-impaired.

People with auditory neuropathy may have normal hearing, or hearing loss ranging from mild to severe; they always have poor speech-perception abilities, meaning they have trouble understanding speech clearly. Often, speech perception is worse than would be predicted by the degree of hearing loss. For example, a person with auditory neuropathy may be able to hear sounds, but would still have difficulty recognizing spoken words. Sounds may fade in and out for these individuals and seem out of sync.

Auditory Neuropathy
 
This is a great thread worth reading. Can the CI centers tell if you have auditory neuropathy or retocochlear disorder and would not benefit from CI?
On another note, do they ever mix up monosyllabic word with sentence speech recognition? The FDA's guidelines are 20% monosyllabic word and 50% sentence.
 
This is a great thread worth reading. Can the CI centers tell if you have auditory neuropathy or retocochlear disorder and would not benefit from CI?
On another note, do they ever mix up monosyllabic word with sentence speech recognition? The FDA's guidelines are 20% monosyllabic word and 50% sentence.

Some kids with AN do great with CI's, some get very little benefit. They have terrible results with hearing aids, almost universally. They can "hear well" but can not access speech at all.
 
Aren't there various tests which rule out different matters prior to consideration of Cochlear Implant? I was given a raft of tests at Sunnybrook prior to being approved for a Cochlear Implant. Must assume the Hospital for Sick children/Toronto do the same thing for young children.

Advance Bionics Harmony activated Aug/07
 
I happen to know 2 infants personally (met their parents online, ended up emailing back and forth for about 6months) that got all the way through the "CI pre-OP screening" including tons of various tests, HA trials etc ... and were approved.

During the wait time (6-8months I think it may have been more ?) their hearing started to improve ... one from Profound to mod the other Profound to mild - if I recall correctly, both ended up with mild HL about 2 years later. They use HAs or FM at school but not at home (unless needed).

I'm sure this is VERY rare ... but it does happen
 
i would assume is has something to do with brain plasticity. The brain adapts and rewires itself, especially fast in young children. I guess it would have to be a very specific type of loss, where the hair cells themselves are fine but somewhere the neuron connections are not great until they are pruned and remodeled during the first few months of life. Interesting that he says 17 months.... i thought most CI centers recommend implantation within the first 18 months or something?
interesting interesting
*EQL*
 
i'm really hoping that Drphil doesn't go and end up digging up ALL the old deafdude threads...ugh
 
Advise me please - what should i do?

Hi
I am new to this forum, I found this post on the google search.
I hope someone here might be able to advise me.:wave:

My daughter is 19 months old, she was diagnosed with sensio-nureal (sorry of that is spelt incorrectly) hearing loss at 10 days old.

Her first test came up with a moderate-severe hearing loss, but the consultant could make head nor tail of the results on paper, so we were refered for a second test, in a different hospital, this time the results were a severe loss that was permanent, we were advised to have her fitted with hearing aids at 6 weeks old.

The very first time we took her out with her hearing aids, the only other couple in the cafe were deaf, it was strange, as i ate in that cafe almost everyday of my pregnancy, and had never met them before, we spoke to the lady, who had enough speech I could understand her perfectly, her partner was unable to speak and she signed to him, all her children were hearing, it was the begining of out journey into the deaf world.

I have to admit we felt devestated, for our baby, that she would never hear a bird, or the wind, or much of our voice, we were told when we spoke loudly all she would hear was a whisper.

We had her aids fitted, they squealed constantly, i was sure they shouldnt sound like that, the woman said just turn down the volume, it seemed strange, i read up, and as her moulds had been taken at 6 weeks old and she was now 14 weeks old she had out grown them, it was a battle to get her new moulds every three weeks, but we did it.

A consutant requested an appointment we arrived and the same woman who fitted her hearing aids was there too, we also had been asigned a hearing teacher of the deaf, and an educational audiologist, but no actual information, we were told to look up the National Childrens Deaf Society to obtain information, they didnt have anything for us to take away, the meeting seemed pointless, and then we were asked to consider cochlear implants, that our daughet might never talk, and that we were best to "step on the train now, or find it hard later" she should have them fitted at 6 months, we were in shock, and went home, it was a week before christmas, and the bedside manner of the hospital was nil, i called the woman, she told me to have a drink and try not to worry, i am teetotal, so even that annoyed the hell out of me.

We spent the next few weeks exploring the net, ordering books, and being given several different opinions, our GP, at a check up, she is not deaf, our health worker, she is not deaf, a health visitor - if you dont have implants she will never hear or talk, friends - look she responded, grandparents - she is too interactive to be deaf....it was real heartbreaking and horrible, we were coming to terms with a different life for ourselves and our daughter, had begun "baby sign, makaton" classes and came to the decision after reading many deaf forums, that an implant could only be our daughters decision.

We were met with horrified looks, and told, if at any point we believe you are not doing the best for your daugher we will seek to over rule your authority!

We were given a Childrens Protocol for the Deaf Manual, with tick boxes and each tick was a different part of develpoment, our daughters results were abover her age limit on several sections and at the right limit for her age on others.

We noticed she responded to sounds, would wake up if the phone rang, the door knocked, but every time we mentioned this to the hearing teacher she told us it was just what we wanted to see, that there was no way a severely deaf child would hear those noises, that it may be a light or something else disturbing her, that our friends were also seeing what they wanted to, and in denial, it was hard, our daughter is deaf we just have to accept it.

She has always been vocal and soon a speech therapist was visiting, things took a turn, she told us her sounds were speech like and there was signs of development of the auditory loop.

We told the consutant we wanted to delay any talk of implants until her next hearing test at 8 months, we were met by frowns, but they repsected our decision.

The 8 month hearing check showed what the audiologist called "progress" and that we must be pleased, that now the loss was moderate, hold on it was a severe pemranent loss, how could it improve, change of subject, and before we knew it we were gone with newely adjusted hearing aids.

We moved home, and moved authority, it took months for paperwork to be transfered, the speech therapist visited at 1 year, and said if i didnt have severe hearing loss on this paper, i would asume she was of normal hearing.

Whenever we put her hearing aids in she took them out, still to this day we will be lucky to get half an hour of wear, before she flings them on the floor and stamps on them, she hums along to her favourite songs on tv, and responds to requests such as wear is the cat? lets go out? time for bed. She says a few words.

Last week we went for her first hearing test in 6 months, she responded to noises without her aids, but couldnt hear them with the hearing aids in, the audiologist checked the aids and said they were set to calm, and this ws not the correct setting for our daughter to get any benifit, we told them what had gone on with the old authority, and thy looked, shocked and a little exhausted by the treatment we had recieved, the center we went to was full of information and was the first proper dedicated hearing center we had visited.

Because her aids were not set up properly and it took him over half an hour to re programme them, we will go back in a few weeks for a test,

this post really makes me feel a little more confident in my mothers instinct, which is that if anything my daughter has a very small loss, she is now 19 months, the speech therapist visited a few weeks ago and was so impressed we will not see her until her second birthday.

Anyone point me in the direction of anybody going through a similar experiance?

Sorry if it turned into an essay.

<3
 
Hello, and welcome! Where are you located?

...
A consutant requested an appointment we arrived and the same woman who fitted her hearing aids was there too, we also had been asigned a hearing teacher of the deaf, and an educational audiologist, but no actual information, we were told to look up the National Childrens Deaf Society to obtain information, they didnt have anything for us to take away, the meeting seemed pointless, and then we were asked to consider cochlear implants, that our daughet might never talk, and that we were best to "step on the train now, or find it hard later" she should have them fitted at 6 months, we were in shock, and went home, it was a week before christmas, and the bedside manner of the hospital was nil, i called the woman, she told me to have a drink and try not to worry, i am teetotal, so even that annoyed the hell out of me.
...

Wow, huge red flags here: the "authorities" you were encountering referred to CIs as something a child is "fitted with" by 6 months? There's not a fitting, it's not like buying a dress or getting braces put on. Apparently they don't even realize that surgery is involved. Very scary that these were the people in a position to advise you. And saying that a moderate to severe loss should mean a child couldn't ever speak, shouldn't hear any environmental sounds? A lot of misinformation provided.

Your GP really told you "she is too interactive to be deaf"? Hmm. I'd be fighting back a long slow backhand. Deaf children are not lacking in this area. My child has always been extremely interactive, as an infant, she seemed moreso than a lot of hearing kids her age because she was watching and visually following anyone around her intently.

Between telling you to go have a drink and saying " ...we will seek to over rule your authority!" I'd be hauling out of there in a shot. I'm not sure in which country you live, it doesn't sound like the processes or organizations involved that we have here, and the testing before actual implantation is pretty intensive in US hospitals.

Best of luck with whatever your child's hearing situation really is (were you thinking mild loss?).
 
I live in Britain, i would call it the UK, but its not much united at the moment.

It seems in our country, the service and experiance changed from area to area,
the attitude of everyone where my daughter was diagnosed was that we were in denial, thats not the case, its just we were never sure if the diagnoses was acurate.

Some people in the UK get little help, where we were living there were about 10 people assigned to my daughter, some used to do home visits where they would drink tea and do very little, what can you do with a baby? But anyhow they know best right? surely its not just pen pushing jobs for the boys?

Well I decided to move becuase i couldnt stand it any more, we moved just 10 miles but accross borders, we now live in a new "shire" and although we keep our old doctor (the gp actually did a 4 month baby check on my daughter, as did the health visitor and didnt pick up on her hearing loss, and ticked her test as normal, until i told them afterwards that she had been diagnosed, they felt the tests they did would have picked up on this, and therefore she couldnt be deaf) we get a whole different hearing service.

We moved last July, it took until Jan this year for my daughters files to get 10 miles, i also asked for a copy, its really thick full of sheets of paper that dont even detail ANYTHING not even what happened on home visits, just that they did the home visits, makes me wonder if they get paid per view? lol

so now we are starting from scratch, the new authoirty tells us our daughter wouldnt have just been implanted but they would do a variety of tests before hand, i still think after readying the original post that 6 months is way to early, but it seems here in sunny old England, our government wants ALL children with severe/profound loss fitted, regardless of what parents say, had i stayed where i was i may have been forced to have it done to my daughter.

i still feel it would be up to my daughter, i dont know what she can really hear, i wont know that for some time, i guess, but i couldnt have implants fitted not knowing if maybe her hearing has improved, clearly it has, but will it continue, or did the original place get it wrong., i guess i will never know?

All i know is i want the best i can give my daughter for now, so i am waiting for this test like it was Christmas!

Thanks for the replys and the link, makes interesting reading, i am a conspiracy theorist, i dont trust my government, and dont really trust any authorities much, i think it all about money, in UK people that live in areas get cancer treatments, and if you live somewhere else you wont, they call it postcode lottery, i call it rich get better, poor get poorer!
 
^^ no, thanks for that "essay". That was great. Can I keep that for future reference? I know of some profs who teach SPED at one of the universities who would be interested...I wonder if your daughter has a processing disorder? It sounds like she obviously has access to sound (and differentiating between some tones). I don't know if any other parent at AD has children with similiar "symptoms"...Grendel? You've been here awhile.

And if you tell us your location, there are people on AD (deafy for sure) that could help you find resources. Depending on where you are, you *maybe* could get hooked up with university staff...
 
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