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

[jillio]

That's of interest. I never could speak on the phone with my HA. I guess even at age 7, (when I tried to use the phone) the sound was too distorted for me to use it. I have congenital rubella syndrome btw.

When I referred to patterns, I meant patterns of loss; as in the drops and elevations of the actual audiogram. Residiual hearing will vary somewhat, but of the known causes of congenital deafness, maternal rubella and maternal CMV show the greatest degree of usable residual hearing overall. But then, we have to also consider that as the individual.

My point was just that there is a very good chance that a child deafned from CMV will have a good degree of useable residual hearing, and I have a problem with destroying that prior to even being able to determine what that level might be.

 

[deafskeptic]

When I referred to patterns, I meant patterns of loss; as in the drops and elevations of the actual audiogram. Residiual hearing will vary somewhat, but of the known causes of congenital deafness, maternal rubella and maternal CMV show the greatest degree of usable residual hearing overall. But then, we have to also consider that as the individual.

My point was just that there is a very good chance that a child deafned from CMV will have a good degree of useable residual hearing, and I have a problem with destroying that prior to even being able to determine what that level might be.

Ah, I see.

 

[Calums mum]

Jillio - I have done a lot of research on CMV and also on hearing loss. Not all people with CMV have the same level of hearing loss. I know children deafened by CMV who use hearing aids fine. Their levels are individual as with any other person with a hearing loss. I would love to know the source of your information.

Calums' hearing aids are, from what I understand, the most powerful available. He has had them turned up maximum for 6 months and it is quite clear that he isn't hearing any speech sounds. If we want him to learn to listen and talk I believe that cochlear implants will give him the only chance that he will have.

 

[jillio]

Jillio - I have done a lot of research on CMV and also on hearing loss. Not all people with CMV have the same level of hearing loss. I know children deafened by CMV who use hearing aids fine. Their levels are individual as with any other person with a hearing loss. I would love to know the source of your information.

Calums' hearing aids are, from what I understand, the most powerful available. He has had them turned up maximum for 6 months and it is quite clear that he isn't hearing any speech sounds. If we want him to learn to listen and talk I believe that cochlear implants will give him the only chance that he will have.

The source of my information would be medical research done regarding various etiologies, and in particular CMV done over the past 25 years, 25 years of experience in working with the deaf of various etiologies, many, many books dealing with patterns of loss and individual responses to such, a terminal degree in clinical psychology with specialization in deaf issues, and documented audiograms of various clients over the years.

Forgot to add: raising to adulthood a son with congenital CMV deafness.

 

[deafskeptic]

Jillio - I have done a lot of research on CMV and also on hearing loss. Not all people with CMV have the same level of hearing loss. I know children deafened by CMV who use hearing aids fine. Their levels are individual as with any other person with a hearing loss. I would love to know the source of your information.

Calums' hearing aids are, from what I understand, the most powerful available. He has had them turned up maximum for 6 months and it is quite clear that he isn't hearing any speech sounds. If we want him to learn to listen and talk I believe that cochlear implants will give him the only chance that he will have.

Maybe. CIs don't guarantee that a baby will pick up on speech. He will never hear normally and there will situations where listening will be a problem for him i.e crowded resturants, noisy situation or even a family reunion - even with a CI.

 

[Beach girl]

Maybe. CIs don't guarantee that a baby will pick up on speech. He will never hear normally and there will situations where listening will be a problem for him i.e crowded resturants, noisy situation or even a family reunion - even with a CI.

His mum most likely knows that. Imperfect hearing probably beats out no hearing, in her view.

Individual decision. Sounds like she's done her research and made what she thought would be the best choice for him.

 

[deafskeptic]

His mum most likely knows that. Imperfect hearing probably beats out no hearing, in her view.

Individual decision. Sounds like she's done her research and made what she thought would be the best choice for him.

Has she considered what might happen if the CI don't work for the baby?

 

[deafskeptic]

Has she considered what might happen if the CI don't work for the baby?

Or what the options would be if the CI doesn't works as well as she wants.

 

[jillio]

I would also like to add that as Calum's mum travels down that road of raising a deaf child, CI or no, she will, along the way, encounter the audist attitudes that will help her to understand a bit better exactly what we objected to in the article. Keep in mind, her child is an infant. All of the life changing experiences are yet ahead of her.

 

[DeafCaroline]

Calums' hearing aids are, from what I understand, the most powerful available. He has had them turned up maximum for 6 months and it is quite clear that he isn't hearing any speech sounds. If we want him to learn to listen and talk I believe that cochlear implants will give him the only chance that he will have.

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 only Deaf person I knew and it was a very lonely life. 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.

 

[Calums mum]

Wow lots to answer!

Thank you all for responding to me. I do appreciate your feedback. I'm not sure who to respond to first.

Firstly, let me explain why I've contacted the papers about Calum. When I was told that the cause of Calum's deafness was CMV I have found myself getting increasingly frustrated with health professionals who do not even know what it is. I keep getting told that CMV is rare, when it isn't. I am contacting media to raise awareness of CMV - however, I'm finding that they are not interested in that, but are interested in him having cochlear implants soon. Another article has been published today in another local paper, which I'll attempt to post to the site.

 

[Calums mum]

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 only Deaf person I knew and it was a very lonely life. 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.

I completely appreciate what you are saying. However, those who know me know that I'm not very good at listening to what professionals have to tell me! Calum, who is going to be 1 on Saturday, is very good at telling everyone what he wants already! I believe that everyone is happier if they can communicate and people understand their wants and desires. We are doing BSL with him, he understands at least 60 signs, and the signs that he can do include: Mummy, food, milk, light on, light off, train, ball, mouse (for Mickey Mouse), home, please, bye and door. There is a large deaf community in Derby, and we regularly go to the local Early Years Centre for the Deaf where Calum and his elder brother meet lots of deaf children and adults.

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 professionals that we deal with, including Calum's auditory verbal therapits, are aware that I believe that I am the professional when it comes to Calum not them - I of course listen to every tiny piece of advice that they can tell me and question them all the time, but at the end of the day I make the decisions for Calum, until he is old enough to tell me his opinions in a more detailed way that just wanting the light switching on or off!

I think sign language is amazing and always have. When I was 10 or 11 I had a friend who was deaf, with no speech, and I didn't really have any sign, but we just communicated. I took my first son, who is know 3, to baby signing (BSL baby signing not makaton) and he knew 60 signs by 16 months - this was before there was any deafness in my family.

I hope this helps you to appreciate where I'm coming from and my little boy has got the best care possible, and parents who will listen and respect his wishes.

 

[Calums mum]

When I referred to patterns, I meant patterns of loss; as in the drops and elevations of the actual audiogram. Residiual hearing will vary somewhat, but of the known causes of congenital deafness, maternal rubella and maternal CMV show the greatest degree of usable residual hearing overall. But then, we have to also consider that as the individual.

My point was just that there is a very good chance that a child deafned from CMV will have a good degree of useable residual hearing, and I have a problem with destroying that prior to even being able to determine what that level might be.

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?

 

[posts from hell]

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?

My question to you would be why are you very interested in making sure he can hear/speak?

Also, for some reason - the media does not give the Deaf much of a nod. This is a bit of where most of your frustration is coming in from. Also a BIG part of where my frustration comes from too.

Hence the criticism of the articles and ways they are written here. I see that you are raising awareness which is GREAT. I would pay attention to the language use though.

 

[jillio]

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 only Deaf person I knew and it was a very lonely life. 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.[/QUOTE]

Great post. And regarding the bolded: so eloquent.

 

[jillio]

Thank you all for responding to me. I do appreciate your feedback. I'm not sure who to respond to first.

Firstly, let me explain why I've contacted the papers about Calum. When I was told that the cause of Calum's deafness was CMV I have found myself getting increasingly frustrated with health professionals who do not even know what it is. I keep getting told that CMV is rare, when it isn't. I am contacting media to raise awareness of CMV - however, I'm finding that they are not interested in that, but are interested in him having cochlear implants soon. Another article has been published today in another local paper, which I'll attempt to post to the site.

It is rare in a congenital transmission sense. Perhaps .05% of infants are born with congenital CMV exposure. However, we do have a few members here who are deaf as the result of congenital CMV exposure.

 

[Calums mum]

My question to you would be why are you very interested in making sure he can hear/speak?.

I want to give him every opportunity that is available to him in life. I have hundreds of reasons why I would want him to listen and speak but my main one is that if I leave it for him to decide if he wants an implant or not then the research shows that he will not catch up with his peers.

 

[Calums mum]

It is rare in a congenital transmission sense. Perhaps .05% of infants are born with congenital CMV exposure. However, we do have a few members here who are deaf as the result of congenital CMV exposure.

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.

 

[posts from hell]

I want to give him every opportunity that is available to him in life. I have hundreds of reasons why I would want him to listen and speak but my main one is that if I leave it for him to decide if he wants an implant or not then the research shows that he will not catch up with his peers.

Catch up with his peers in what?

 

[Calums mum]

Catch up with his peers in what?

Speech and language development mainly.