Baby born deaf will get 'bionic ears' that could help him hear and talk

[posts from hell]

Speech and language development mainly.

Alright, I will only extend my agreement to speech development.

 

[Calums mum]

Alright, I will only extend my agreement to speech development.

Out of interest do you wear hearing aids? I assume you don't have a CI! What are your hearing levels like?

 

[jillio]

The surgeons at Nottingham QMC are some of the best in the world at keeping the residual hearing. I have spoken with the surgeon myself. I have not come to the decision of having cochlear implants lightly. I am aware of how the 'auditory brain' works - however I can't put it into words so here's someone elses: "When the brain is insufficiently stimulated by sound over a period of time, it can lose a portion of its ability to process information," said Dr. Beyer. "This condition is called auditory deprivation and studies indicate that the longer a patient goes without treatment the more likely it is that the brain will forget how to process speech, even after treatment is implemented."

However, I'm sure that you're well aware of all this. Myself, my husband and other professionals, including private professionals, have spent hours looking for any small flicker of recognition to sound. We really haven't seen any, even if we had the recognition would need to be noticable with HA's for him to be able to learn to listen and speak.

I would like to hear more about your child with congenital CMV if you don't mind please?

First, please allow me to address your quote regarding the "auditory brain":

Before the brain can "forget" how to process auditory information, there has to have been a point where it was processing auditory information. For an adventitiously deafened person, this would hold true. For a congenitally deaf child, the brain cannot forget what it has never known. When your child is implanted, he will not be "remembering" how to process auditory information, because, as I said, the brain cannot "forget" what it has never known.

The auditory centers in the brain that process aural stimuli do not atrophy. They are converted for use to process visual information. Your child, having been born deaf, has been using his visual processing abilities to make sense of the world in which he lives. I would venture to say that he is already speech reading to the degree that he understands when mum makes her mouth look a certain way, it means thus and thus is going to happen. However, that does not mean that he is making an auditory connection, but rather, a purely visual connection.

My son was, as I said, congenitally exposed to CMV. I was lucky in that the friend who was diagnosed informed me immediately so that my son could be red flagged at birth. This was before newborn screening was the norm.

By the time he was a few weeks old, I knew he was not responding to sound as a normal nfant would. All testing at that point was fairly inconclusive, however, because the only way that you can know the ways in which a child can adapt and make use of even a small amount of residual hearing is to wait until they are old enough for voluntary responsive type testing. However, I began exposing my son to sign language and Deaf adults around the age of 6 months. It was only after speaking to those adults that had been deaf children that I was able to make this decision without question. The hearing experts cannot tell me what a deaf child needs. Only those adults who were deaf children can tell me what they needed as kids.

My son was raised in a fully bi-lingual environment, both home and educationally. He managaged to attend a hearing university with interpreter accommodations, to graduate, and is now attending graduate school. He was never implanted. I decided long ago that his deafness was his to live with, not mine. If and when he reached the point that he felt he needed a CI for any reason, I would support that decision, and would still do so today. However, until he made the decision that he needed a CI to live with his deafness, I would not make that decision for him. I am not deaf. I am hearing. I cannot make that decision for him. I do not know what it is to be deaf. Despite being severe to profound, and making the decision himself to use only one HA very early on, he has developed excellent speech skills. He interacts with hearing people on a daily basis. However, he considers himself to be Deaf, as in culturally so, and his first language to be ASL. He is comfortable, however, in both worlds. The most recent response I received from him regarding CI was that he did not see how his life could be any better or improved in any way just by adding sound. That was, perhaps, 2 years ago.

If you have any specific questions, please feel free to ask me.

 

[jillio]

Recent figures are showing that it's more like 0.66% (1 in every 150) babies who are born positive for CMV with 10% showing symptoms at birth and 10% developing problems later.

I was referring to symptomatic infants. Those who are not symptomatic at birth and are not tested at birth, but develop issues later...it really cannot be determined at that time whether exposure was pre-natal or post-natal. All that can be determined is that they have an elevated titer or carry antibodies. Time of exposure cannot be determined unless they are tested immediately following birth. And the traditional heel stick method used has been shown to be less that 100% accurrate.

 

[posts from hell]

Out of interest do you wear hearing aids? I assume you don't have a CI! What are your hearing levels like?

Yeah, good assumption.

I'm profoundly deaf, never wore any hearing equipment since I was 15. Even before then while I was wearing them, I had them turned off to appease the teachers, parents and other people that "had to make sure I was hearing something". I personally never enjoyed them.

I want you to also keep in mind that there also are people who enjoys their hearing as well.

 

[shel90]

First, please allow me to address your quote regarding the "auditory brain":

Before the brain can "forget" how to process auditory information, there has to have been a point where it was processing auditory information. For an adventitiously deafened person, this would hold true. For a congenitally deaf child, the brain cannot forget what it has never known. When your child is implanted, he will not be "remembering" how to process auditory information, because, as I said, the brain cannot "forget" what it has never known.

The auditory centers in the brain that process aural stimuli do not atrophy. They are converted for use to process visual information. Your child, having been born deaf, has been using his visual processing abilities to make sense of the world in which he lives. I would venture to say that he is already speech reading to the degree that he understands when mum makes her mouth look a certain way, it means thus and thus is going to happen. However, that does not mean that he is making an auditory connection, but rather, a purely visual connection.

My son was, as I said, congenitally exposed to CMV. I was lucky in that the friend who was diagnosed informed me immediately so that my son could be red flagged at birth. This was before newborn screening was the norm.

By the time he was a few weeks old, I knew he was not responding to sound as a normal nfant would. All testing at that point was fairly inconclusive, however, because the only way that you can know the ways in which a child can adapt and make use of even a small amount of residual hearing is to wait until they are old enough for voluntary responsive type testing. However, I began exposing my son to sign language and Deaf adults around the age of 6 months. It was only after speaking to those adults that had been deaf children that I was able to make this decision without question. The hearing experts cannot tell me what a deaf child needs. Only those adults who were deaf children can tell me what they needed as kids.

My son was raised in a fully bi-lingual environment, both home and educationally. He managaged to attend a hearing university with interpreter accommodations, to graduate, and is now attending graduate school. He was never implanted. I decided long ago that his deafness was his to live with, not mine. If and when he reached the point that he felt he needed a CI for any reason, I would support that decision, and would still do so today. However, until he made the decision that he needed a CI to live with his deafness, I would not make that decision for him. I am not deaf. I am hearing. I cannot make that decision for him. I do not know what it is to be deaf. Despite being severe to profound, and making the decision himself to use only one HA very early on, he has developed excellent speech skills. He interacts with hearing people on a daily basis. However, he considers himself to be Deaf, as in culturally so, and his first language to be ASL. He is comfortable, however, in both worlds. The most recent response I received from him regarding CI was that he did not see how his life could be any better or improved in any way just by adding sound. That was, perhaps, 2 years ago.

If you have any specific questions, please feel free to ask me.

I wish I had grown up with the opportunities your son had.

To the OP, I was restricted to the hearing world only with no opportunities to learn ASL or to the Deaf community because it was felt by the hearing people that I didnt need either due to my good speech skills. As an adult, I learned ASL and found the Deaf community and for the first time in my life, I found true happiness. That was at 28 years old. Being something that I wasnt all of my life created so much emotional turmoil...and that was trying to be a hearing person.

 

[Calums mum]

Article

Hi

I have attached a copy of the article that appeared in our local paper today. I'm sure you will have some comments on this too!

Obviously most of you feel strongly about my decision to implant my child, however, he is my child and I feel that I am making the right decision for him. I am not willing to wait until he is old enough to decide for himself, for reasons I have already explained - again that is my decision as we all make decisions for our children.

I am just a Mum, trying to raise awareness of CMV in the best way I know how, so in the future when a Mum wants supports with her child who has a congenital CMV infection there are professionals who know about it. I may not be deaf, but I know my child better than anyone else, be they deaf or hearing. I have listened to other peoples opinions, including the deaf adults who our local teachers of the deaf team have as support workers - as I say there is a large deaf community around Derby.

I also know that Calum has a wonderful Mum (and Dad, and brother!) who will listen (be that speaking or signing) to him and go out of my way to accomodate his wishes and support him in whatever he chooses to do in life.

 

[DeafCaroline]

Calums' Mom - sounds like you've really considered this from all angles and that's great!

Yeah, the writer of that article needs to rethink its wording...such as "For the first few weeks of Calum's life, Gaye believed he was a healthy baby."

So, Deaf people are not healthy? Know what I mean? it's very subtle but that kind of phrasing is a dead giveaway of hearing people's attitudes towards the Deaf. And we can't help but bristle when that happens.

Anyway, hang out here long enough and you will learn a lot! Welcome!

 

[jillio]

I wish I had grown up with the opportunities your son had.

To the OP, I was restricted to the hearing world only with no opportunities to learn ASL or to the Deaf community because it was felt by the hearing people that I didnt need either due to my good speech skills. As an adult, I learned ASL and found the Deaf community and for the first time in my life, I found true happiness. That was at 28 years old. Being something that I wasnt all of my life created so much emotional turmoil...and that was trying to be a hearing person.

New parents rarely consider the psycho-social implications of their decisions. The focus is on providing auditory stimulation, thinking that is what is needed to address the problem. It rarely does anything to solve the problems of psycho-social and educational issues the kids suffer as they grow. I wish parents could look at that baby, and imagine how they will be affected by certain decisions in 10, 15, 20, 25 years time.

 

[sallylou]

Use of the word "coping" is appropriate when a person is dealing with a plight. Being Deaf is not a plight.

Notice how important blame is here? Blame is on the CMV. But what about when Deafness is truly a part of who a person is? I have a genetic mutation that has run though generations. Is this a defect that I should blame? Not from my point of views because it's who I am. I don't feel like I was robbed of anything.

Calum's mom, you don't need to defend yourself because my comments are not directed at you. You are an individual dong the best that you can under the circumstances. That doesn't excuse society collectively from treating Deaf people as impaired or broken.

 

[kokonut]

Hi

I am the Mother of the baby in the article. After finding these posts on the internet and had to respond and clear a few things up.

Firstly 'Bionic ears' are indeed just cochlear implants.

Secondly, Calum does not get any useful hearing from hearing aids. Even at a recent party when balloons burst next to him with his hearing aids on he still didn't respond. At a recent ABR (automated brain response) hearing test and going up to 115db not one response was recorded. When Calum was a few weeks old he briefly opened his eyes to his brothers ear piercing squeals, but with CMV the deafness can be progressive.

I fully appreciate and feel extremely proud of my child, and am aware that he will always be deaf. However, the only way to get him hearing anything is for him to have cochlear implants. I am an extremely dedicated Mum and have researched my decision extensively.

Regards,

Mrs Gaye Tomlinson

Congratulations! You made an informed decision to the best of your ability. I was very fortunate to have a dedicated mother who helped me hear and speak with my hearing aid but that was back during the 1960s and things have changed considerably since then. Keep up the good work! And involve your son as much as you can.

 

[Bebonang]

Hello, if I may give you a word of advice....I do understand your desire as his mother to want to give him hearing or some hearing. My mother wanted the same thing for me which resulted in my getting hearing aids at age 4. Then 10 years of intensive therapy after that. Was mainstreamed, etc. I now speak very very well, I was constantly trotted out in front of hearing parents, was on the news, was in newspapers and magazines as the spokesmodel for the Oral Deaf. In that sense, I was a big success in that I speak and lipread very well but I was not happy being the Deaf person and it was a very lonely life. (Just want to change the words only and I knew off to reveal about me, hope you don't mind, Deaf Caroline.) Why is that? Because no matter how well I speak, it doesn't make me hear any better.

I dearly hope you will keep that in mind when you are having your son undergo invasive surgery at such a young age then making him take intensive speech therapy lessons. I know you want what's best for him so I am not going to judge you but please, don't keep him out of the Deaf world or culture. It's essential for him and for his self-confidence to be with those who understand him, to be with those who he can understand perfectly and never feel left out. It's the best thing you can do for his psyche.

I am hoping you are givng as much consideration to your son having access to ASL and Deaf culture where he can meet others like him. This is so essential for one's well being in life.

The reason I am saying this is because how you phrased this sentence was very telling: "If we want him to learn to listen and talk..." This is what YOU want. My mother wanted me to have the best chance in life and did what she thought was best based on many professionals' opinions and even followed their advice to ignore me when I came home crying every single day begging my mother not to send me back, and this started in kindergarten. First time I started entertaining suicidal thoughts was in first grade. It's really a miserable existence when you are being mainstreamed, only deaf kid in school and you sound "retarded" which gives "normal" kids full license to treat you like you're sub-human who deserved to be abused when no one was looking. I did try to let the teachers know and was told not to be a tattletale so I suffered in silence after that. My mother never knew how bad it was for me at school.

I really wish she realized that I was really unhappy and sent me to a school for the Deaf. I wished she listened to me, not what hearing professionals told her. Which is another important point - do give Deaf people's opinions as much consideration as you do the hearing's.

So, while I commend you for wanting the best for your child, I also advise you that if you expect your child to learn to listen, then you must also learn to listen to him. You're not deaf, he is.

To the Op, my mother wanted me to hear just like you wanted your son to hear. Well, with my one left ear (severe hearing loss with hearing aid), I can hear sounds but not pick up the words very well at all. My right ear (profound hearing loss and no hearing aid), but to listen is absurd as no hearing loss will not be like the normal hearing just like hearing people hear. Hearing loss is totally different than normal hearing.

You don't know what hearing loss is like very different than normal hearing. That is why you are not deaf but your son Calum is. He will never hear the sound after the birth. How can he remember what sounds was like?

I was born deaf because my mother was sick when she was 4 months pregnant and keep going back and forth from home to hospital and from hospital to home over and over until I was born. My mother almost died of a fever when she was very very sick. I was born deaf like this with no idea of what sounds was like.

I had my first hearing aid when I was almost 9 years old. I watched a lot of visual going around at home and outside playing with hearing children (never thought they were hearing). I was happy being me as a deaf child. I was never pressured into what my mother want me to do. But she had kept me from going to the Deaf school when I was not happy in the mainstream elementary and high school (public schools with oral method only).

I struggled very badly trying to make the grades in high schools where there was no interpreters and no knowledge of ASL for me to learn. They have forbidden me not to use sign language at all. My mother must have lied to me plenty to downgrade me not having this special accommodations in the educational settings. That was why I was mad at both my mother and my father years ago. I am an old lady now and both of my parents are deceased three years apart from each other (they were divorced many years ago when I was 14 years old.)

That is why it is important to listen to the child and not put pressured on him to do what you want. Let him be the person he is as a deaf person whether he speak or sign. BSL should be his primary language before he speak. He can use both of them. But to be in the mainstream school and not getting the education he needs, he will be frustrated and not happy about the way he could not get access to his education needs. So help him get what he needs but let him tell you what he wants with signs. You will be able to understand in his deaf world. I hope I am getting through to you.

 

[Liza]

mmm, 'kay. next!

 

[TXgolfer]

Hi

I am the Mother of the baby in the article. After finding these posts on the internet and had to respond and clear a few things up.

Firstly 'Bionic ears' are indeed just cochlear implants.

Secondly, Calum does not get any useful hearing from hearing aids. Even at a recent party when balloons burst next to him with his hearing aids on he still didn't respond. At a recent ABR (automated brain response) hearing test and going up to 115db not one response was recorded. When Calum was a few weeks old he briefly opened his eyes to his brothers ear piercing squeals, but with CMV the deafness can be progressive.

I fully appreciate and feel extremely proud of my child, and am aware that he will always be deaf. However, the only way to get him hearing anything is for him to have cochlear implants. I am an extremely dedicated Mum and have researched my decision extensively.

Regards,

Mrs Gaye Tomlinson

Good luck to you and your son.

 

[Calums mum]

To the Op, my mother wanted me to hear just like you wanted your son to hear. Well, with my one left ear (severe hearing loss with hearing aid), I can hear sounds but not pick up the words very well at all. My right ear (profound hearing loss and no hearing aid), but to listen is absurd as no hearing loss will not be like the normal hearing just like hearing people hear. Hearing loss is totally different than normal hearing.

You don't know what hearing loss is like very different than normal hearing. That is why you are not deaf but your son Calum is. He will never hear the sound after the birth. How can he remember what sounds was like?

I was born deaf because my mother was sick when she was 4 months pregnant and keep going back and forth from home to hospital and from hospital to home over and over until I was born. My mother almost died of a fever when she was very very sick. I was born deaf like this with no idea of what sounds was like.

I had my first hearing aid when I was almost 9 years old. I watched a lot of visual going around at home and outside playing with hearing children (never thought they were hearing). I was happy being me as a deaf child. I was never pressured into what my mother want me to do. But she had kept me from going to the Deaf school when I was not happy in the mainstream elementary and high school (public schools with oral method only).

I struggled very badly trying to make the grades in high schools where there was no interpreters and no knowledge of ASL for me to learn. They have forbidden me not to use sign language at all. My mother must have lied to me plenty to downgrade me not having this special accommodations in the educational settings. That was why I was mad at both my mother and my father years ago. I am an old lady now and both of my parents are deceased three years apart from each other (they were divorced many years ago when I was 14 years old.)

That is why it is important to listen to the child and not put pressured on him to do what you want. Let him be the person he is as a deaf person whether he speak or sign. BSL should be his primary language before he speak. He can use both of them. But to be in the mainstream school and not getting the education he needs, he will be frustrated and not happy about the way he could not get access to his education needs. So help him get what he needs but let him tell you what he wants with signs. You will be able to understand in his deaf world. I hope I am getting through to you.

You don't need to get through to me. I find your post quite offensive to me, as well as judgemental. I have already addressed the education issues in my previous post. Your experiences are not everyones experiences. You are judging my child as being only 'deaf' rather than an individual. I also feel that you are judging me to be only 'hearing'.

With regard to this comment: How can he remember what sounds was like?

I don't want him to 'remember' - you're not gracing me with much intelligence. I want him to 'learn' to listen. I'm teaching him signing as I've already explained. I am hearing - you seem to be saying that as I am hearing I can't possibly understand what he is going through. I'm unsure that this is true - I have adapted the way I communicate with and am actively encouraging my family to do the same. If I give him the confidence now to tell me his opinions when he's older then I really can't do anymore than that. In my opinion you should be supporting Mum's like me.:roll:

 

[shel90]

You don't need to get through to me. I find your post quite offensive to me, as well as judgemental. I have already addressed the education issues in my previous post. Your experiences are not everyones experiences. You are judging my child as being only 'deaf' rather than an individual. I also feel that you are judging me to be only 'hearing'.

With regard to this comment: How can he remember what sounds was like?

I don't want him to 'remember' - you're not gracing me with much intelligence. I want him to 'learn' to listen. I'm teaching him signing as I've already explained. I am hearing - you seem to be saying that as I am hearing I can't possibly understand what he is going through. I'm unsure that this is true - I have adapted the way I communicate with and am actively encouraging my family to do the same. If I give him the confidence now to tell me his opinions when he's older then I really can't do anymore than that. In my opinion you should be supporting Mum's like me.:roll:

Bebonang is intelligent but doesnt express her thoughts very well through English like many deaf people. The reason for that was because she was screwed by the educational system when mainstreamed without any support or resources. It has happened to so many of us and we are concerned for your son's well being as we have the experience to how mainstreaming is risky due to the restricted access of communication and education for deaf children. If he had an interpreter while being mainstreamed, then the risks go down.

I am glad you are using BSL with him. Using both really is great!

 

[Calums mum]

Bebonang is intelligent but doesnt express her thoughts very well through English like many deaf people. The reason for that was because she was screwed by the educational system when mainstreamed without any support or resources. It has happened to so many of us and we are concerned for your son's well being as we have the experience to how mainstreaming is risky due to the restricted access of communication and education for deaf children. If he had an interpreter while being mainstreamed, then the risks go down.

I am glad you are using BSL with him. Using both really is great!

I didn't say that Bebonang wasn't intelligent! I said that she was assuming that I wasn't very intelligent! I have already posted about Calum's education:

The school I intend Calum to go to is indeed mainstream. However, I agree with you completely, and wouldn't want him to go to a school where he was the only one who was deaf. The school seems wonderful, with lots of support, and has teachers of the deaf as well as the rooms being acoustically treated. There are around 3 or 4 deaf children in every classroom. If Calum doesn't do at all well with his CI's then there is a school for the deaf 10 miles away where I will take him. I will be guided by Calum, and would never ever see either of my children upset or worried without doing everything in my power to help them.

The very idea of getting him implanted early is so that he has the best chance of learning to listen and speak. Evidence shows that the children implanted early doing phenomenally well with their CI's, I have also met some of these children, and seen videos of many more. He will be educated with deaf AND hearing children, as this is what the real world is like and it's my job as his Mum to equip him for the real world.

 

[Bottesini]

You don't need to get through to me. I find your post quite offensive to me, as well as judgemental. I have already addressed the education issues in my previous post. Your experiences are not everyones experiences. You are judging my child as being only 'deaf' rather than an individual. I also feel that you are judging me to be only 'hearing'.

With regard to this comment: How can he remember what sounds was like?

I don't want him to 'remember' - you're not gracing me with much intelligence. I want him to 'learn' to listen. I'm teaching him signing as I've already explained. I am hearing - you seem to be saying that as I am hearing I can't possibly understand what he is going through. I'm unsure that this is true - I have adapted the way I communicate with and am actively encouraging my family to do the same. If I give him the confidence now to tell me his opinions when he's older then I really can't do anymore than that. In my opinion you should be supporting Mum's like me.:roll:

You may find that a lot of us old deaf people who went through the mainstream feel a lot like Bebonang.

 

[Hohtopics]

You may find that a lot of us old deaf people who went through the mainstream feel a lot like Bebonang.

Yes, but don't forget things were different back then, 40, 50 or 60 years ago than they are now. For starters, deaf children weren't hearing as good generally as they do now.

 

[Bottesini]

Yes, but don't forget things were different back then, 40, 50 or 60 years ago than they are now. For starters, deaf children weren't hearing as good generally as they do now.

I know it. But new parents don't have any idea what it was like, and they get really hostile. They want all the respect and encouragement from us, but don't give respect in return.

I realize that I will never know what modern children hear with the new technologies, but the new parents might refer to a kid like CoolSpyerGirl who has had implants and is frank and honest about the fact that it doesnt' make her hear like a hearing child at all.