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.

email me at aitch at babyledweaning dot com and i'll tell you, kokeshi.
sorry for the late night/early morning hijack, laurney.

Hey guys, my dd is deaf, which is a huge deal. Pls don't hijack because I get excited that there are new messages and then they have nothing to do w. this problem. (Sorry, I know I'm sensitive, but this is new and very scary.)

Sorry Laurney, I've been posting quite prolifically on my own recent experiences of deafness and now suddenly being able to hear again. This is still very new to me so it's a huge deal for me too, and get excited about telling people about what I can do now.

I hope some of my links are helpful to you.

Yes, they were, thanks Kokeshi. Sorry, I didn't pick up on the what you can do now angle... I should have, as it's encouraging. I just saw the 'I have no experience with deafness' on here and got upset, probably because if I'm 100% honest I wish I had no experience with it either. I know that's terrible, and I won't feel like that for long. I'm mostly doing ok now controlling my worrying (and dd seems not to care in the slightest, is probably just looking forward to an implant she can put in her mouth and drool on) but the slightest thing can make me upset again. Hopefully talking to the people here (and finding out why this happened and that there is no underlying problem) will cause me to chill out!

Kokeshi, one question: Do you hear the same as you did before? I mean, will my voice sound like my voice to dd? I know she won't know the difference because she's never heard, but... And do you know what type of language therapy they do to help? Is it just reading and talking? (I talk A LOT, so would be good in that dept!) And is the implant awkward or uncomfortable or cumbersome? Do you hide it with your hair? Does it get caught on stuff? Ok, so not one question but about twenty!

I understand how worrying it is, and how your mind goes into overdrive. I was thinking that maybe I had a brain tumour, maybe I'd lose my sight next...just because the doctors couldn't tell me why I'd lost my hearing.

So to your questions: Remember my experiences are all as a late-deafened adult with a strong memory of sound so it may vary for your daughter.

2 months on and I can say that pretty much everything sounds close to it did before I lost my hearing. Just after switch-on everything sounded very "tinny". The best anaolgy was that speech sounded like it was coming through a McDonald's drive through speaker. Do you know what I'm talking about?
It really seems to have resolved itself though.

I have been told that the results in children are very encouraging, and if it was me with a deaf child I wouldn't think twice about it. Being deaf is an absolute nightmare, you are isolated from everything and everyone and so many normal life experiences just escape you. Interacting with people is so important to us developing and I know that implanted deaf children can go into mainstream school.

I don't find it cumbersome at all, I have the Cochlear Nucleus Freedom, the latest model and it's very advanced. It will never be natural hearing but is pretty close! I have problems with background noise and places that echo. I think very young children are given body worn processors that are easier to control than the adult head worn ones. You'll have to check this though...CristinatheAstonishing's son has recently been implanted, she may be able to shed some light on that.

If your DD is implanted at such a young age, she will be "hearing" for the most critical period of speech development, which I believe is very important to the long term result. I have well developed speech (I was 30 when I lost my hearing) and a strong memory of sound, which all contribute to good results in adulthood.

I have chosed a brown colour for the processor, which matches my hair colour. I don't think it's too noticable but it's not something I worry about really. Most people who meet me now wouldn't know that I am profoundly deaf - which is unbelievable really!

They have funky colours for kids, and one wee girl I saw (about 2 years old) was just amazing. It's stunning to see a child - who without it would be relegated to silence - interacting, talking and playing with her family.

I found the best way for me to deal with my dx was to find out as much as possible about personal experiences as they'll tell you much more about the emotional impact of profound deafness and implantation.

Have a look at this link.

sorry laurney, i didn't mean to upset you. our chat took place last night at 4am, were you still up?

Hiya! Hope you are feeling a bit brighter today?

Just wanted to add something to Kokeshi's post about being deaf meaning you are isolated from everything and everyone and so many normal life experiences just escape you - I know she won't mind if I tell you to please bear in mind that this experience is from someone who lost hearing later in life and I personally believe that is so much harder to come to terms with as you have to get used to being deaf and you are comparing it to what life was like before.

Being deaf from such a young age, meant I did not have a 'before being deaf' hearing to compare things with and I can honestly say I don't find it isolating and that I don't feel I miss out on normal life experiences - purely because you never miss what you haven't had. I'm an extremely social person - have never let my deafness get in the way of anything I've wanted to do - I've even learnt basic Arabic before I fell pregs with DS and was too sick to do anything apart from lie on sofa and whinge!!! lol!! I've travelled as well...my recent trip was to Syria and I even went shopping on my own when DS stayed with DH and family and was asking for stuff myself (acting like I knew far more Arabic than I actually do!) and generally being very independent - its all about outlook really. I can't change being deaf, but I can change how I react and deal with it iyswim?

Ok, yes there are small things like birds singing in the morning etc - but hey, most people who meet me tell me I don't look 30 so all that uninterrupted sleep (pre DS obviously!) must be doing something!

Hugs

Niks

That's ok--thankfully was sleeping at 4AM, and I guess was just overexcited to see large no. of messages and grouchy when I logged on this morning. It's good though, right, because it keeps conversation active? (Still learning basics of mumsnet.)

exactly, it bumps it into acive convos. lol at your wrinkles, i interviewed a deafblind chap once who boasted that he'd never had a distrubed night's sleep in his life! (other than when he wanted to disturb it, iykwim? [leer])

Hi Niks! I think dd is already experiencing the sleep benefits, as am I. As DH said, she sleeps like a grownup. 8 hours at night, then wakes up smiling for a minute before SCREAMING for her breakfast. She takes a few shortish naps during the day, but seems to get the 'night is for sleeping, day is for playing' idea. I've started formula, too, which I think fills her up enough to sleep for long stretches. And I get what you mean about always having been deaf. But were other kids understanding of it when you were little?

That's a great story Nik, and I have no doubt you live life to the full and probably with a greater determination than a lot of hearing folk. I think it was harder for me because a) I knew what I was missing and b) I had no other means of communication.

Children are very resourceful but no contest, I would rather have my hearing as it's not just about your own attitudes - I found that many people are very very ignorant and have no idea about deaf awareness. Even to the extent that as well as having no hearing, they thought I was brain damaged in some way. It was really shocking.

It's fantastic to have a whole range of experiences, Mumsnet is great for providing such a thing.

I'll be honest - you do get the odd twat picking on you about being deaf but with kids, they pick on anything they can find if they want to, so I wouldn't worry about that-they will always find something! Kids will be kids! My sis got picked on for taking her PE kit to school in a tescos carrier bag....it had to be Next or whatever to be considered cool!!

But - I had more friends who helped me than who didn't! Had some lovely lovely kids for friends when I was younger who learn a little bit of sign language and excitedly come over to you and are pleased to show you that they learnt something, they liked trying my hearing aid...tapping me if I was needed to something, so I think it really sorts out the wheat from the chaff when it comes to mates! Also, these days loads of parents take their kids to baby sign so they are learning basic sign language before they have even started school - that's only a good thing imo.

My best mate was always on hand when we went shopping to help me out if I didn't hear anything, my little sister when she was only two already knew she had to gently turn my face to her to talk to me and I'm sure DS will be the same when he learns more!
He's already pulled my hearing aid out for close examination the little bugger!!

Also, things are sooo developed now. In my day there was no teletext, no videos with subtitles, no subtitled screenings at cinemas, no minicoms, no mobile phones for texting so from that angle - I missed out on TV/films etc but now practically everything on DVD is subtitled, I'm a total text addict and can communicate with friends, have a minicom for phoning water company or whatever, there's e-mail etc and that helps sooooooo much!

My little cousins are fab as well - always make sure I'm facing them - kids are sooo adaptable and nothing really fazes them - I think they accept things more than adults do actually! DH is very understanding as well - except, as I mentioned before when the teletext subtitles get in the way of a hot chick's arse! lol!!

You are welcome to pop down to Bristol for the day and I'm happy to meet up for a chat (as long as cake is involved!) and hopefully meeting a deaf adult will help you....I can also speak to my mum if you want and see if she would be ok to talk to you on phone if you want to talk to a parent who has gone through similar to what you are going through?

Niks

PS -Aitch - DS ate tuna pasta bake today - troughed it right in!! Loved his courgettes! That's my BLW boy!!

Laurney - I would recommend the Parent Place forum at the National Deaf Childrens Society (NDCS - sorry can't do links) website which I think someone has mentioned previously. If you post on there you are sure to get a lot of replies. I have two deaf DCs but they do not have implants so am not really able to give you any advice in this area.

Hope you don't mind me asking this Niks (and Laurney) but can you hear anything at all? Is speech a problem for you? I guess I'm lucky in that respect - even though I can't hear I can still make myself understood.

I'm actually looking into starting a BSL course in August. I'm still deaf, will always will be and technology can fail! Not bad at the old lip-reading now, I still rely on it when I'm somewhere busy.

Niks I suppose you are right about kids finding anything to pick on each other about. And plus, bad situations/reactions will weed out the people I wouldn't want dd to be friends with anyway, even if she didn't have hearing loss. There are always a few bad ones in every class... Niks I would love to meet you, and can arrange for cake to be involved. I'm going to give away my American-ness, but how far is Bristol from London? DH is English, but would tease me if I asked him!

Should add, we just moved back to London last December. Haven't been living here forever and just ignoring the geography

Its not far really -I've done business meetings to London in under two hours...I could always meet you at the station and take you for coffe somewhere...a weekend would probably be better as DH could have bubs and then we could talk properly without him whinging to get out of his buggy etc! Whereabouts in America are you from? I love the American accent - find it very easy to lipread actually...hope you aren't the exception! Ha ha!!

I don't actually hear very much - I'd guess about 2% but I really do make it work for me and I'm so lucky that my speech is good and my lipreading is well...can I be very unmodest here and say I'm fab at it!! I also think - and this is strange but true, that I've actually learnt to use my hearing more since DS has been born - am so much more in tune with things than before as I have to be....funny how it works.....

Hi Laurney, just found this thread (I've been away).

Oh, and my normal name is welliemum .

Like kokeshi, I lost my hearing as an adult, but unlike her, had many years of being profoundly deaf before having a cochlear implant. So you see, everyone's experience is different...

I've had my implant switched on for just over 2 months now, and it's been a time of huge (good!) change.

Before switch-on, I could hear almost nothing. Would have heard a jumbo jet taking off next to me as a faint noise. I was working, studying, 2 children, travelling, etc etc - a normal, full life by anyone's standards.

As a summary I would say, if you're deaf you can do pretty much anything, BUT it might involve much more effort. That's when deafness can be very limiting - you have only so much energy in a day. So for me, there was no hesitation in going for an implant and I would choose the same for my children.

Cochlear implant: the op is very minor and your dd will never remember it. I was quite unsteady for a few days, but not bothered by pain. (Mine's a Med-El implant by the way).

Switch-on: a very emotional day for me - but something I imagine a toddler would take in her stride! The initial sounds on switch on were overwhelming and psychedelic and nothing sounded the way it "should". With no previous experience of hearing I imagine this wouldn't be a problem - but sound itself would be a totally new thing to get used to.

2 months on: I'm still on the steep bit of the learning curve, but I feel as if I've got my hearing back. Every day I hear more. I'm functioning like a hearing person in many ways, yet am still using my deaf strategies eg lipreading. I love it that I can hear things without being able to see them - it's as if my world has suddenly expanded.

The crucial concept (to me) is that you don't hear with your ears, you hear with your brain. All the CI does is to connect your brain to the outside world - you do the rest yourself. It's a learning process and toddlers are outstandingly good at learning, which I think is why children who are born deaf and implanted early do really, really well.

Must go, but I'm happy to answer any questions Laurney.

PS Train from Paddington to Bristol is easy and quick - though not cheap!

(I used to live near Brrristowl)

Niks, I would love to meet up for a coffee one weekend--can you email me at lauren at regal-literary dot com? (I'll probably get tons of spam for having my email on the internet, but I get in anyway and am not technologically advanced enough to CAT or whatever it is.) My American accent is Midwestern, which is about the most boring American accent there is. Also probably very lip-readable because I think we speak more slowly than English people! And I completely believe it about hearing more since having your son. My mum (mom) told me that after you have a child you never sleep the same again, even when the child isn't with you, because you instinctively have one ear listening all the time, so your ears are probably working overtime!

Welliemum, thanks so much for sharing your implant story. The hospital told us yesterday that they have done successful implants on babies as young as eight months, so I'm trying to find out everything I can. Of course, if she's eligible, we'll do it. Not sure about 8 mos though; the consultant said he had treated a very small number of kids who were born with temporary senseuorneural hearing loss so we have to be careful unless we can identify the cause. (Although that scenario was in the single digits out of thousands, so we're not going to hold our breath!) From your experience, would it be managable on a child that young?

Have e-mailed you Hope it gets through ok....am sensing a literary theme from your posts btw!

Mmmm....just got a failed report for the e-mail...can you check your e-mail address again please?

niks, it is lauren [at] regal hyphen literary dot com. (It's a hyphen, not an underscore, which is weird I know.)