Miss-Delectable

A BABY boy who was born profoundly deaf after his mother had one of the most common viral illnesses during pregnancy is set to get bionic ears.

A BABY boy who was born profoundly deaf after his mother had one of the most common viral illnesses during pregnancy is set to get bionic ears.

Calum Tomlinson is on the waiting list for surgery at Nottingham's Queen's Medical Centre to fit him with implants deep inside his ear which could help him talk like a hearing child.

Mum Gaye did not realise she had been ill during pregnancy because she had no symptoms of the virus, which is so common it infects about half of all adults in the UK.

NHS Choices says cytomegalo virus, also known as CMV, is one of the most common viral infections but most people have no symptoms and so are unaware of it.

At present, 11-month-old Calum is coping with his disability by learning sign language and can already communicate around 20 words including "mummy", "food" and "train".

Gaye was told a fortnight ago that Calum would be given surgery within six to eight weeks.

The 33-year-old, of Greenacre Avenue, Heanor, said: "The idea is that he will understand speech but it will require a lot of therapy, which we are getting every two weeks in Oxford."

Tracey Twomey, head of service for the Nottingham Cochlear Implant Programme, said the technology was "quite miraculous, really".

She said: "I think it's life-changing. Some 20 years ago, profoundly deaf children were given the most powerful hearing aids, which were little more than an aid to lip-reading.

"Deaf children can still use sign language but for those who have the implants early enough in life, they can use the electrical signal to give enough sensation to be able to pick up speech and learn to talk."

It is estimated that between one and four babies in every 200 are born with CMV and, of those, a tenth have symptoms.

Gaye said: "I didn't feel poorly during pregnancy, I didn't know anything was wrong."

For the first few weeks of Calum's life, Gaye believed he was a healthy baby.

She said: "When he was in his cot and I walked around he woke up so I didn't think that he couldn't hear me. I realise now he would have felt the vibrations."

After four weeks, tests at Derbyshire Children's Hospital revealed he was deaf.

Gaye said: "I held Calum in my arms during the test and, after 80 minutes of testing, the doctor told us Calum was severely to profoundly deaf. It was a big shock."

Calum's uncles, Mark Lomas and Simon Tomlinson, and family friend Richard Irwin, are taking on the Three Peaks Challenge on June 25.

They are raising money for the CMV Support Group and for Calum to have three years of hearing therapy totalling £13,500.

To donate, visit www. calum-reece.co.uk.

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JoeyDeafNinja

First hearing aids, second CI then now bionic ears? How many more do these people have in their minds?

dogmom

notice, as usual - "disability" and "coping" and "talk like a hearing child"

to me, all words implying "wrongness" and "less than".....

JoeyDeafNinja

I hate peopel force deaf children to learn oral! They trying to bash our deaf pride!

Banjo

It's just a pity that one would have to compare a deaf child to a hearing child.

Banjo

Don't you have a cochlear implant?

Beach girl

How would you re-write it? As a grammar and language maven (for good or for evil...), I'm always interested in how things could be expressed differently.

I've noticed that the Brits use "coping" quite a bit more in normal conversation than Americans do. My sister-in-law will say "We're coping with this heat wave" (if temps get above 72 degrees....) or "I'm trying to cope with all the planning for the new baby" (my niece- her daughter - is expecting) and things like that, where Americans probably would not phrase it like that. It doesn't come across as negative to me, since I'm used to hearing it so much from her in various contexts.

MidnightSun

You are so right. Why do ppl have to attach what are percieved by the general population as negative adjectives? They already have labeled this child as needing something else to be "acceptable"..this breaks my heart'
Midnight♥♥♥

jillio

Frankly, the article disgusts me in many ways. Particularly since, CMV deafness follows a particular audiographical pattern, and the vast majority of CMV deafened individuals retain a great deal of usable residual hearing that allows for good speech perception with HAs. And this is despite their actual dB levels placing them anywhere between the severe to profound range of actual loss.

The key word in the article is "could". There is no guarantee that he will be better off with a CI, or even not worse off with a CI, than with an HA. There is no guarantee of increase in dB levels, or of his learning to speak with a CI. This is a case of experimentation and is a result of the overwhelming audist nature of hearing society.

rockin'robin

Just wait until I get my Mickey Mouse ears!

Beach girl

I want Mr. Spock's ears, m'self. And the rest of Mr. Spock to go along with them...

Hohtopics

FYI, I think bionic ears is just another way of saying cochlear implants. I don't think it's anything different.

Jiro

cool. best of luck to them... but I won't be donating any money

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Speedy Hawk

Noticed that too. Don't like it much.

Buffalo

Would it be the same for those born deaf because of rubella? I used to be able to talk to my mother on the phone years ago. I could talk on phone only with people that I am very familiar with.

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Calums mum

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

posts from hell

I have a problem with the article itself and the society perception of which hearing is a must.

That is all. Nothing personal against you or your decisions.

jillio

Yes, actually. CMV deafness and rubella deafness show very similar patterns.

jillio

He is an infant. It is impossible at this point to tell how much he would be able to use his residual hearing with HAs.

deafskeptic

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.

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jillio

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

Ah, I see.

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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

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

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.

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Beach girl

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

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

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deafskeptic

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

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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

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.