Cochlear Implants?????

[Laurney]

DD (15 weeks) has been diagnosed w profound sensironeural hearing loss. DH and I were devastated at first, having no prev experience w deafness, but now DD is being accessed for a cochlear implant, maybe at age 1. Does anyone have experience with this? We don't know what to expect in terms of success, what is involved... and Google has produced such a range of possibilites it's hard to discern which stories are accurate/typical.

Hi Laurney - my DS is 7.5. He was born profoundly deaf, connexin 26 in his case (a faulty gene which both I and my husband carry and he got both faulty copies from us). We used a little BSL to start with and hearing aids from 9 months old. They started working properly about 4 months later and at 15 months he said his first word. He had very good response from hearing aids, which is why he kept being postponed for a cochlear implant. He finally got one this February. The difference is amazing. We can hold conversations w/o lipreading, in the dark, through the tent, from the front of the car to the back, from one room to the other.

CICS is the Cochlear Implanted Children's Support Group - tel. Tricia on 020 8876 8605. She can put you in touch with other families with children of a similar age to your or just slightly older if you want to talk to someone further along the line, or much older etc. They also organize lots of activities.

NDCS South & West London branch - tel. me on 07946 165 726. We try and organize activities locally for children, according to age groups. Again, you can meet other parents and see their kids and how they are doing with a CI or hearing aids or BSL.

Auditory Verbal UK on www.avuk.org is supposed to be excellent. Perhaps speech therapy isn't the right term for babies your DD's age, but you can learn lots of ways to help communicate with her before she becomes verbal.

The best e-mail list I know of is at www.listen-up.org (v good website too), the email list may be a bit heavy going for someone new to this but it's a wonderful resource for in a few months' time or so.

Let me know if you'd like to meet up. I'm busy till the end of next week (on jury service) and then on Tuesdays afterwards, but free otherwise during the holidays till the last week in August. DS is very chatty & I love showing him off. We also have a 2.4 year old DD who can hear and I'm pregnant with another DD whose hearing status we don't know yet (she has a 1/4 risk of being deaf too). What I know, though, is that if she does need an implant I'll push much harder for her to have it asap.

Oh cristina! Congratulations, when are you due?! I'm going to the LINK Centre for Deafened Adults in Eastbourne for volunteer training. I feel like I really want to give something back. So many people helped me during the first few weeks of my deafness (including you guys on here) and it made such a difference.

Laurney, one thing I can definitely testify to is the the deaf/deafened community are really supportive and you'll never feel like you're on your own with anything.

Best of luck with the meet-ups!

Thanks, Kokeshi. I'm due in mid-October. I had a CVS done (old age) and found out it's a girl. Didn't want to ask whether she's deaf or not, I think it would have been easy enough as they were checking up on the chromosomes anyway, beacuse it really isn't the end of the world anymore for us. This is totally different to how I'd have thought about these matters before having DS or even the first couple of years after when I'd have thought it irresponsible etc to knowingly have another deaf child. I'm ashamed I thought in those terms, although I still hanker occasionally after the innocence of ignorance if it would have meant DS not being deaf. Good luck with the LINK training, I too feel like it's something, even if very little, I can do to change society's perceptions (including new parents' fears) about deafness.

Cristina, thanks so much. They are testing dd for Connexin 26have to take her today to get blood drawn. Poor little thing. We have no history of hearing loss on either sidedid you? To be honest, in some ways I would be sad, but at least I would know it's nothing I did, and not one of these syndromes. Did you worry about that when you found out your son was deaf? I can't sleep for worrying about it. Deafness I can handle, and can help her and make everything alright, but some of the possibilites are horrible, and I don't know what I'd do. DD seems perfectly normal--she smiles, watches EVERYTHING, squeals all the time, and can do all of the physical stuff ahead of normal, so I'm trying to control myself. But last night she slept for almost 8 hours straight (with a few thumb-sucking half-awake sessions thrown in there) and instead of enjoying it I worry, so today I'm busily counting the number of hours she sleeps in total. (She also likes to stay awake for 8-9 hours at a stretch!)

How is your DS now? Do you feel like he still requires special help? Does he go to mainstream school? Is there anything he has trouble with, or can't do? And are the other kids understanding? Sorry for all the questions, just trying to soak up info! I keep hearing varying degrees of what to expect. We took her to the first place, and they made cochlear implants sound like aids, but not really something to consider until later, or something that would change her life. Then we went to some fancy surgeon on Harley Street (thank you, insurance!) and he said essentially, 'She's young. If she qualifies, we'll slap an implant or two on her and she'll be completely normal--normal speech, normal school, normal talking on the phone.' He sent us to the Portland Hospital, which is amazing so far, but if it is indeed Connexin 26 or something else genetic then we'll go the NHS route, b/c insurance doesn't cover congenital conditions. So I guess in that sense I hope it's something that happened during childbirth. (I did have an emergency c-section.)

And re: the opinion that it might be irresponsible to have another baby who is deaf, I've always had the same opinion about that scenario, even before dd. You sound like a wonderful mother and ds sounds like he is doing well. He isn't in constant pain, he is able to know how much you love him, he's probably very happy, so why wouldn't you provide that for someone else? The way I think about it is that if dd is only deaf, she got dealt a bit of a crap hand early on, but not in the whole scheme of things. She could have been born with something that would really hurt her, she could have been born in a slum in Calcutta or to abusive parents. Instead she'll probably be spoiled rotten and end up a horrid brat whose Mummy still makes her sleep in bed with her when she's 15 because she can't bear to put her in her own room.

And sorry post is so long!

What a twunt...I typed literacy by mistake

That should get through now.....its cos I'm blonde

No history of deafnes in our family either. My dad is one of 12 children. His oldest half-brother is deaf but it was thought to be due to TB his mum had had during pregnancy. He married a deaf woman, have hearing son and grandson. No-one else of my numerous cousins, on either side of the family, are deaf themselves or have deaf children. So it was out of the blue to be told Dominic's deafness is from connexin 26. My husband doesn't know all his family but amongst those his parents have kept in touch with, again, no deafness.

Cochlear implants are fabulous but they do mean a lot of work in a young child. Not so much in Dominic's case because he'd already had the benefit of the hearing aids, but I'd imagine it's a long journey for a little baby, although easier than with hearing aids. especially if the deafness is so profound you're going to get to a CI sooner or later anyway.

DS is 7. The things he can't do are hear when he doesn't wear his CI, self-evident, so situations like swimming or let's say sleeping at night in a tent and hearing the noises outside. He won't get the same degree of enjoyment from music as a hearing child would, which is OK for the time being but I am concerned how this will affect him when he's a teenager or older and music becomes a big part of your life. Yesterday he went with his school at Chessington adventure park. He went on the same rides as anyone else, including the water ones, so he can do rough and tumble and reasonable exposure to water & rain when he has his CI on. He can play football, tennis, cricket. Rugby may be off limits unless he wears protective headgear.

His speech is good, still has some trouble with ch/sh, j/g (e.g. pleasure/merger), z and tz (e.g. pizza), th/TH (e.g. faith/feaTHer). He can say all these sounds but needs reminding when to use which. Don't forget that till March this year he'd never actually heard some of these sounds, just pronounced them, so he's having to re-learn some words altogether.

Academically, Domi is doing very well indeed. I taught him to read very early on and this is one of my all-time greatest achievements. He's a very good reader and this has helped him alot. He's very sociable and has been at the same nursery and now school, with the same bunch of children, so no bullying or social isolation, they grew up together from an early enough age that these things didn't matter. It's a good school and this makes us reluctant to move house in case he wouldn't be as well received elsewhere. I worry how it will be at secondary school when he'll be on his own and have to make new friends.

I know the feeling of uncertainty in those early days when you're still searching for a reason. It's horrible, that bragaining with "oh, please, let him be just deaf and nothing else". On the upside... that was the lowest point in my life and I decided then that nothing else matters. I've chanelled my energies on him and become more accepting or indifferent to other "problems" in my life.

Dominic had a traumatic birth, with a low Apgar score (2 at 5 birth, then 7 at 5 minutes), then a week of phototherapy. I too wondered if it was something during birth, could I have been more assertive and had a better delivery, did his bilirubin levels go too high before they started phototherapy etc. I got a copy of my notes from the hospital and went through them. It was a relief knowing that it was connexin 26 and that it wouldn't/shouldn't be part of anything else. There were lots of lows along the way but he's doing so well now and at long last it's all in the past.

I'll get back to you later or tomorrow as DH has just got in from work and we're going out.

You might also find some useful information from the Ear Foundation.
Hope you're managing to find the support and information you need.

hi laurney, Just wanted to say hi and tell you about my ds (5) next month. He had his cochlear implant done this past thursday (12th july) at st thomas's in london. Alls well and he is recovering well. Its me thats following him everywhere with pillows in case he bumps into anything!! I may be just a tad over protective!!!

We have 1st day switch on the 15th august and again 16th august. So will let you know how it all goes.

no i havent how do i find?

Sugar34plum - how exciting! I hope all goes well at switch-on. For my DS(7) switch-on (February this year) was a bit of a disappointment but things started picking up within a few days and he had his "a-ha" moment soon enough when he stopped himself mid-sentence to say "I heard that: sh! sh! sh!".

Hi Laurney
I haven't read the whole thread yet but I just wanted to say hello as I am in exactly the same situation as you. My DD is 17 weeks old and we found out she was profoundly deaf when she was 6 weeks old. She has had hearing aids for 4 weeks now but it's too early to say whether they will make any difference or not. If they don't do her much good then she would be assessed for an implant. We were devastated at first as there is no family history, no prematurity etc etc, but it is just one of those things and I can't believe how much better I already feel about it than I did 11 weeks ago.

She is my beautiful baby and her deafness is only one small part of her, it does not define her. I know there are things that we will find difficult in the future but I try not to look too far forward and just concentrate on enjoying the here and now.

We are in Glasgow and the support available to us has been excellent. All of the health care professionals working with us are so positive about DD's future and her expectations.

Please CAT me if you want or we can chat on this thread. I apologise for posting in a hurry but I was just so excited to see someone else going through the same thing.

I've now read the whole thread and it has made me cry! So many lovely posts and almost all positive and encouraging. I saw that someone had recommended the Parents' Forum on the NDCS website. I have to say I'm not keen on it as I feel a lot of the posts are quite negative. However, our local branch of NDCS has been fantastic. We have been visited by a family support worker who gave us lots of information and I've met some other mums with deaf children.

Re timing for an implant, we have been told that 12 months is the earliest that they would consider doing it. That's on the NHS and it would be done at Crosshouse where Kokeshi had hers done. I think it will be closer to 18 months to be honest and if she gets it sooner then it will be a bonus. We have been told that we need to go to Crosshouse every 3 weeks for the whole of the first year and each appointment will normally take a few hours so it's a big time commitment. I imagine that there will be a lot of work to do with DD over and above that but I'm not worrying about any of that yet as I'm sure we'll manage when the time comes.

We have been told that by the time she goes to school (and the expectation is that will be mainstream) her speech will be within 'normal' boundaries and people may not realise she is deaf at all.

I really cannot believe how far we have come over the last 11 weeks. Our friends and family have been brilliant and it seems like everyone knows someone who is deaf and has only positive stories to tell. It is still sometimes hard though and I had a complete wobble this week over Ushers Syndrome (child born deaf and then vision lost in teens) but our speech therapist really tried to set my mind at rest on that front.

You may have found this already, but I really enjoyed reading this blog www.charlesarthur.com/blog/?cat=10

Hi Kikidee,

Wow, it is so nice to be able to talk to someone in exactly the same situation! We've felt the same about the last two months. It was terrible at first (I cried for days and days, and even dh cried, which I don't think I'd ever seen before) because we had no idea what it would mean. And now after gathering information and talking to friends, it seems just like something we have to deal with but not the end of the world at all. So, apart from worrying about the usual things like is she eating enough or too much, why does she drool so much, is her poo the right color, etc., we've been able to relax a bit and enjoy dd because she is wonderful! We have been shocked by the technology, too--I had no idea cochlear implants were out there. How amazing is it that we are now able to 'restore a sense'? (Not my words, from one of the implant websites.) I must admit though that I have read all about Usher Syndrome and have had at least 3 crying fits because of it. However, I literally just got off the phone with our consultant at the Portland Hospital, and he said these syndromes are very, very, very rare. He had set up an appt with an opthamologist and one for an MRI, and I was worried, but he said it is just standard practice. DD had a test for CMV, too, which can cause later blindness, and that came out negative. The consultant said, if you think about it, only one in a thousand babies are born deaf (which isn't much comfort to us, obviously) but then he said of those children, say one in a few hundred or thousand will have something else wrong, and not to worry. Easier said than done though, right?

DD is being assessed for an implant, they are treating the hearing aids as part of the assessment. She's supposed to be getting them soon. Are they hard to keep on? Does your dd mind them? Are they the behind-the-ear ones?

DD had to have blood drawn on Friday (which was so awful, but I think worse for me than her!) for the genetic test for Connexin 26, which takes about a month. The person at the implant center told us they would do the implant at 8 months, but we heard that you also have to be careful because there have been cases of temporary sens. deafness, www.sciencedaily.com/releases/2007/05/070516091838.htm My dh found this and we both thought it was probably not accurate, but the consultant said he had seen it... but it is very, very rare and not something to hope for, really, just to consider when choosing the right time for implants. So I guess if they can find out the cause for the hearing loss, we'll go ahead, but maybe wait a bit longer if not.

Have you noticed anything about your dd that would have led you to suspect she couldn't hear w/o the screening test? Our dd doesn't startle at loud noises, so I think after awhile I would have noticed, but her eyes are amazing, and if you start talking she looks at you even from across the room, I think just because your face is moving. And we have little chats, where I talk, she waits until I stop, and then she chats. Honestly, I often forget she can't hear me, she's so expressive and smiley. And I drone on and on, so it may be a good thing for her that she can't. (For now!) She also has this sort of 'I'm humoring you with a half-smile, because I can tell you're trying really hard to entertain me, you poor silly Mummy' look, which is my favorite. She raises her eyebrows as if she's wondering how we came to be related.

I'm not technicalogically advanced enough to CAT, but you can email me at lauren [at] regal hyphen literary dot com if you want to chat more!

Sugarplum, that's so exciting! Pls keep us all updated on how it's going!

Hello again! DD had the MRI scan a few weeks ago and we got a letter from our consultant last week to say it was normal. She also had an ECG done at around 7 weeks but for some reason that needs to be done again. We have been offered genetic testing but my DH wasn't keen to have it so we're not going ahead with it for the moment. We already have a DS who is 3 so we don't intend to have any more children so the testing isn't relevant from that perspective. I am keenish to have it done as I would like to know the reason for her deafness but it doesn't really make any difference as we can't change anything. You have to play with the cards you've been dealt, as they say, and it's not really a bad hand at all - just not quite what you would have chosen. As you say, there is some comfort to be had from statistics but it is hard not to watch your baby closely for signs that she is developing normally.

You asked about hearing aids and I would say I am feeling quite upbeat about them at the moment. At the end of my first week with them I was crying tears of frustration. It's not so much that they're hard to keep on (I find) but that it's difficult to make sure they're on properly so that they don't whistle. I feel as if I permanently have one ear cocked to detect a whistle. At the end of my first week I resorted to only wearing the one that I could reasonably consistently fit. Apparently, they used to just give children one for the first few weeks and then once you were used to that, you got the other one. At the end of last week I had another go with the one she hadn't been wearing and was delighted to find that I could get it on properly so she has been wearing both for the last few days and I am delighted with myself. However, today I discovered that she had pulled one off and had it in her mouth. Fortunately I was right beside her and rescued it but I will need to start being really careful as she did it again later. I had heard stories of other mums replacing them literally a hundred times a day but I think we were lulled into a false sense of security with her as she didn't intitially pull them off.

Yes, they are the behind the ear ones. They are quite obvious at the moment but once she has a bit more hair most people won't even notice. I don't think she minds them - she lets me put them on without too much fuss if you catch her at the right time.

I'm not sure whether we would have realised she had a hearing problem or not at this stage but I do think it's now quite obvious that she can't hear. It can be hard to get her attention but once you do have it, it's amazing. She loves to interact and coos and laughs and talks to me as if we are having a conversation. I know what you mean about your DD's eyes though - mine is just the same. She is so interested in everything and I really love to have such an engaged baby. She also doesn't startle and I have found myself crashing saucepan lids together to try and elicit some response. Sometimes I think she's hearing with her aids and sometimes I really don't. I think you could drive yourself mad looking for signs!

DS was diagnosed at 8 months. We had no idea because we weren't looking for any signs. He was very alert and got clues from shadows, watching others' faces to see where they were looking, perhaps smelling perfume to feel someone is approaching. That's speculation on our part. My Dad had looked after DS for a couple of months and after I'd told him DS was deaf he was phoning every day to tell me of instances he'd remembered when DS could most certainly, definitely hear him. I think he was just a very alert baby and always looking around etc and you thought it was your voice he was reacting to when in fact it was chance.

Anyway - tonight I thought I'd come on here to say I let my 7 y.o. DS have a sip of champagne to celebrate his hearing over the phone for the first time ever!!! This was his big hope from an implant. It's nearly 5 months since switch-on and he used DH's mobile and I used the landline and we could have a conversation. It was difficult to start with but then he just got the hang of it. I had to repeat a few things a few times (e.g. he misunderstood Thursday for birthday) but for no lipreading and me asking him things totally out of context one with the next, brilliant. Wishing you to get there with your babies but, hopefully, much sooner than we did with DS

Cristina, that is wonderful about your ds! Our consultant told us that talking on the phone with a stranger (which I assume means talking about things out of context with Mummy as well) is the ultimate test of whether or not an implant has been completely successful. I will give dd an entire bottle of Champagne if she gets there. Just kidding, I'll give her a sip and then I'll drink the rest of it myself .

And I empathize with your Dad. There have been so many coincidences, but then dh and I realized that we're only looking for the times she might be hearing, and ignoring the really obvious times when she isn't. Haven't tried pots and pans (yet), probably because I almost never cook and hadn't thought of it, but have shouted her name in her ear whilst she was sleeping, in a final act of desperation, and not even a wiggle. And I think because she's so obsessed with faces, even the consultant bent down to shout behind her after an OAE showed zilch, looking puzzled. We were so sad when she didn't even blink! And it's frustrating because the nanny, who comes three afternoons a week so that I can work from home, is absolutely convinced she can hear and that she'll be fine. I just don't have the heart to keep telling her; I think she'll get the idea when the hearing aids arrive. Plus I have read that with auditory neuropathy, which I understand is very hard to treat, babies can hear sometimes, so now I'm sort of hoping she never responds.

Kiki, did your dd have to be anesthitized (spelling?) for the MRI? If not, did she mind it at all? And would it be possible for her to choke on the hearing aids, or are you more worried about damaging them?

Auditory Neuropathy is a tricky one. When DS was diagnosed AN was still under question as a "proper" diagnosis. That was only 7 years ago, now it's better recognised. At the time it was a diagnosis many parents pinned their hope on, thinking it's something their children outgrow. I haven't followd it over time (once we knew the cause for DS we only focused on that) but I don't think that people still think this is the case nowadays (that it's a temporary thing).

The use of a phone with a CI is at the top end of achievement and we were never given any guarantees that it would happen or would happen without a lot of hard work and perhaps a couple of years. In fact, maybe because it was the NHS rather than private, the whole CI "promise" was quite subdued, we were told it would be the same or better, no further promises. As DS was consiedered to be doing very well with hearing aids I think it was hard to imagine just how much better a CI could be. He should have had it years ago, it makes such a difference.

That's so good to hear! It makes me confident that an implant would be the right choice for her. It's just so hard waiting to make sure dd is eligible.

The stuff I've read/heard about auditory neuropathy makes it sound bad--they can do an implant if the hair cells are damaged, but if the nerves are, it is much tougher. Or something along those lines... Way too much scary stuff to read so I've cut myself off from google, etc.

And Cristina, I would love to meet up and chat and meet your ds--sorry I didn't respond to that sooner, we're traveling a lot and was trying to figure out our schedule. I'll give you a call on the number you gave, if that's ok. (We're in Northwest London, but dd is now a pro on the tube

Cristina, what a lovely post. I can completely understand how proud you must be of your DS and just delighted by his achievements. It's hearing stories like yours that give me hope for my DD's future - there is no reason not to be hopeful I think. Can I ask why it took so long for your DS to get his implant? Has he had any problems with it and does he find his hearing without it is different to how his hearing was without his aids? I had read that the implant process destroys any residual hearing and wondered about the implications of that. Did you sign with your son and if you did, how did you learn?

Laurney, DD was not anaesthetised for the MRI as it was done at around 12 weeks. They do what is called a 'Feed and Sleep' in young babies so you take them along when they are ready for a feed and the hope is that they then settle off to sleep. We had two attempts as DD is not a great daytime sleeper so wouldn't sleep at the first appointment but we managed it at the second appointment. It takes about 30 minutes. They can also try to use melatonin to help them sleep. I knew the girl who was doing the scan and she said she wouldn't have any qualms about opting for an anaesthetic as it would be so light as you just need the child to sleep - not to actually block any pain.

The moulds for the hearing aids are as small as the inside of the child's ear so quite tiny really and they could be swallowed.

I know what you mean about other people thinking they can hear. My lovely dad is convinced that she's reacting to sounds but I really think it's just coincedental.

Do you have a Teacher of the Deaf Laurney? We have one and also a speech therapist and I have found them so useful for support for me and for answering my questions. My speech therapist in particular is very positive about what to hope for DD's speech.

Have you thought about signing at all?

just coming in for a wave & to say hello - my dd2 wears a bone-anchored hearing aid - a bit different from a cochlear one, but just to say that I know what it's like to have a bionic child

Hello Geekgirl, my DH calls DD's HA's her bionic ears too! At 4 months, she's not the most appreciative audience but her 3 year old brother likes it and is taking evrything in his stride. What is a bone anchored aid and is it for a particular kind of hearing loss?