A fascinating Radio 4 program in the “It’s My Story” series: “Earfull” (stored on Odeo; I hope it survives). First played on 28 November 2008, and telling the story – by an actor aged in his, I think, 60s – going through a cochlear implant. He went deaf in his 20s, and now after four decades (including a life spent as an actor, despite not being able any more to hear dialogue) he is having an implant.
I’m listening to it. Fascinating. He’s talking about having the operation to do the implant and then going to a party the next evening saying “Sorry, can’t stay long, I’ve had brain surgery!” (Except of course that an implant isn’t.)
Including recordings made inside the operating theatre, I have to warn you. “We’re literally operating less than one millimetre away from the facial nerve.”
The experience of actually using the implant happens at about 18:30. He’s a charming man, so happy and amused by the process.
And at 22.45 – you hear a representation of his voice as it comes through the implant. I suspect that it’s processed to make it sound processed, but it does give you an idea of what it’s like. (I suspect it’s normal speech split into 128 channels – which is roughly what it would be like.)
His reaction: “I’ve been playing a deaf character – which I’ve never been able to do before because I couldn’t hear!”
Follow the links to hear their syntheses of sound as hear through a cochlear implant (starting with 1 channel, then 4 channels, then 16 channels, and 22 channels) – and how it gets better and better. These are quite old now by modern standards – we’re up to 128 (virtual) channels on, I think, all the manufacturers. Better lies ahead. (Note: the PBS site can be slow to load.)
I haven’t written much about child3 and his cochlear implant because, well, things are going so well in general. His speech improves all the time (“I don’t want it!” is his favourite new phrase), his listening skills get better (he can hear us saying things, or the sound of the front door, in a room where we have the Today programme with its babble of voices on in the background), all is rosy.
The FDA announced that the implants “pose a public health risk due to excessive moisture, exposing patients to the risk of device failure, possible surgery, and the potential for additional hearing loss.” “Advanced Bionics shipped [cochlear implants] in violation of the law between January 2005 and July 2006.”
The reason: a supplier, Astro Seal, provided components that once incorporated didn’t keep the implants waterproof. Now, if moisture gets into the implant (inside your head, above your ear) then when you attach the external processor – which powers it via FM waves which also carry the signal – then the wearer, besides not getting any hearing, gets unpleasant electric shocks.
The backstory: the FDA had told Advanced Bionics to stop shipping implants with these parts in 2003. Yet somehow they hung around in the system. And child3 was implanted in May 2006. Did that mean he might have one of the potentially faulty implants, which AB itself said had a fail rate of 20% within 3 years?
Note that the FDA/AB recall isn’t for implants already, um, implanted –
In March 2006 Advanced Bionics recalled all unimplanted HiResolution 90K cochlear implants containing the Astro Seal component because some of the devices were not water proof and were failing at an unacceptable rate. Mrs. Rappaport’s device [she's the one suing for damages in the link], unfortunately, had already been implanted by the time of the recall. [Hers failed.]
The FDA estimates that 3,477 of the devices with the Astro Seal component had already been implanted at the time of the 2006 recall. Of those an estimated 1,502 devices were implanted in children under 18 years old.
It wasn’t good finding this on a Sunday evening. Everything’s going swimmingly. But this brought on visions: it stops working, and then we have to go with the nuclear option – explantation. (Implant = put in, explant = take out.) That is, taking the old one out, and putting a new one in. Probably in the same ear. (Would you, though? Or would you implant in the other ear?) That would mean some period during which you’d realise it wasn’t working. And then you’d have the explantation operation, and then at least six weeks for it to heal, and then you’d have to start all over again on the process of “tuning” – getting the brain to start realising what it’s hearing via the implant. OK, young brains have amazing plasticity (their ability to adapt to new inputs) but this feels like a step too far. And that delay, in the time when he should be learning more speech, words, perhaps even written language. Even implanting the other ear some time ahead, if you knew you were going to explant
It’s at this point that you wonder quite what you’ve done to your child. Is that his salvation in his head? Or a ticking time bomb? We’d never had any doubts about the benefits of cochlear implants, but for me this was the most uncomfortable moment of all. The Damoclean sword hanging there: is that seal waterproof? Will it hold?
So being able to check on the next day and confirm that child3’s is not one of the affected implants was the best possible news. Weights lifted, all that sort of thing. But it’s also a reminder that technology isn’t perfect. Hell, nothing is. And the choices we make are all fallible; all we can hope is that they’re the best for the longest possible periods of time.
Update: Advanced Bionics has got in touch to point out that it manufactures in the US – which means the FDA is right on its doorstep, and on its case, with visits every couple of months to the manufacturing. That’s different from other CI makers, based outside the US; while they still have to get FDA approval for work in the US, there’s not the same in-depth inspection. Plus, they don’t get fined for errors.
There’s probably something to be written about how one would hold CI makers to consistent standards: what do you count as an “event” that needs to be reported to the national devices agency? But that’s outside my purview. I’m just relieved, is all.
Doing the Tech Weekly podcast is a lot of fun; in the latest one I’ve gotten to be the interviewer of Kent Ertegrul, chief executive of Phorm, which is being hated (actively) up and down teh interwebs. So I pushed him as hard as I could on the facts of it. “Robust,” they called it in the studio.
Yet it’s still miles away from the live cut-and-thrust that John Humphrys manages seemingly so effortlessly, yet knife-sharp accurately, on the Today programme. He sees through the smokescreens.
Of course we’ve all been discussing the “choosing a deaf child” issue this week; to recap, the deaf parents of a deaf child are looking to IVF, and they want to choose to have a deaf child. The law, as it’s going to be (and already is? It’s not clear) says they can’t choose that; they can only “choose” a hearing child, or at least one which according to PIGD (pre-implantation genetic diagnosis) hasn’t got any major gene defects, which includes “genes for deafness”. (Would that be single or double? If they’re just a carrier like me, does that mean rejection? I can’t find a useful description of quite what PIGD tests for. It tooks weeks for our genetic test to come back. Do they wait that long with PIGD? How many genes do they test for?)
I am loath to criticise them – especially given the hammering they have taken on the radio today already – but I suspect that the couple’s real resistance comes from fear; fear that they will not be able to communicate or bond with a hearing child as they have with their child who is “like them”.
However it’s only when you read the transcript with Humphries interviewing Mr Tomato Lichy (“that’s not a name, it’s a side dish” snarled someone on Comment Is Free) that you see how good Humphrys is at not getting thrown off the scent.
…JH – I don’t think anyone would say, no sensible person would say that deaf people are inferior to hearing people, but the fact is that they have a disability, a pretty serious disability – they cannot hear. Surely you have no right to impose, effectively to impose that disability on another child. The child does not belong to you. The child is a person in its own right.
TL – You say it’s a serious disability. I disagree with that. We have an interpreter here for you to be able to understand me. If I go to a deaf club or a deaf academic conference with thousands of deaf people, you would be lost; you would be the one with the disability because you can’t use sign language.
JH – Isn’t that a slightly perverse point? I, after all, don’t need somebody to sign for me. I can hear the music of Beethoven or listen to a play be Shakespeare or pop music or whatever it happens to be. You can’t, so therefore you have a disability. Surely that’s simply a fact?
TL – Well I feel sorry for you – you haven’t acquired sign language, you can’t appreciate deaf plays, you can’t appreciate deaf poetry, you can’t appreciate the joy of being part of the deaf community, the jokes that go on. I feel sorry for you.
JH – But I could learn sign language if I set myself to it. At least I assume that I could. You can’t learn to hear.
[Perfect riposte. And pause for a minute: could you have come up with that riposte, in real time, to that challenge? That's what makes him so good.]
TL – Yes. But now it’s recognised that deaf people do have a culture, you know, a community of their own. You know, in the old days people used to say that, you know, deaf people were certainly inferior to hearing people, but recently Baroness Deech said, you know, in Parliament, “I hope that your Lordships will be pleased that the deliberate choice of an embryo that is, for example, likely to be deaf, will be prevented by clause 14.” So in saying that, the Government is saying quite clearly that deaf people are inferior to hearing people and that is should be that deaf people should never have been born. She’s basically saying that she want deaf people to be stopped from existing.
JH – Well, no, she isn’t saying that, is she? What she’s saying is that deaf people have the right to exist because they have been born. It would be utterly absurd to suggest otherwise. But there is a great difference between that and making a positive selection so that somebody is born who is not able to hear, as opposed to somebody who is able to hear.
..There’s more of it. The crux is that point of deciding for someone else that they won’t hear. That’s where it parts company with sense, in my view. It’s ever so slightly scary: a sort of eugenics gone bad.
Whether PIGD makes sense – ah, now, that’s a whole different ballgame. That takes us towards Gattaca, and that sort of strange, “choice” world. It happens already – post-partum, in countries which deem girls to be less valuable than boys, so that strangely fewer girls survive their early years than boys.
Assiduous (well, not really; I don’t check my referrer stats, nor which are the most popular posts, or what Google terms bring people to this site) checking of my incoming links shows that the Deafblog has a link to me. Well, glad to return the favour.
Hi, I’m James King, I’m 14 years old and I’m Cochlear implanted – having been so from the age of two; and I’ve just enjoyed an awesome week in the French Alps skiing with CICS, the Cochlear Implant Children’s Support Group
Fabulous stuff. We’re already past the one-year stage of the implantation operation, and coming up to the one-year mark for child3’s switch-on – which always sounds like it’s going to be the dramatic, curtain-raising “Momma, I can hear!” moment, but is instead just a few lights on a display and a confused, slightly wary look in your child’s eyes.
What’s so different about us now is that we understand how it can be that a child who was born deaf can hear, and speak, and what’s more speak with diction that’s comparable with his hearing peers. Really: things are that good. Two years ago, things just looked bleak.
That’s the wonder of cochlear implants; and especially of the device that child3 is using, an Advanced Bionics with the new Hi-Res system, which simulates having 120 hearing channels (which means being able to distinguish 120 different tones) rather than the 16 or so his implant really has.
What’s odd, looking back, is how we completely didn’t know about cochlear implants. Didn’t know about a 20, 30, 40-year-technology that is almost routine to implant, whose effects (benefits and risks) are well-known. Isn’t that strange, in retrospect?
But then again – most people think that rock climbers make their ascent by banging things into the rock. There are all sorts of other things that people have misconceptions about, because they’re slightly out of the mainstream but somehow a bit well-known. I’m tempted to blame the media..
Still, to any other parents of a newly-discovered-to-be-deaf child: things can work out so much better than you expect. Work on it. And the reality may be so much better than you expect.
The Manic Street Preachers once did a gig in Cuba. Before it started, Fidel Castro came backstage to see them. They felt they should warn him that considerable volume is now involved in yer rock concert: “it might be a bit loud tonight,” they warned him.
“As loud as war?” replied Castro, which put them down neatly enough.
However if Fidel had accompanied us this morning to help us look after six young boys and a two-year-old and a couple of more rational older girls, he would have had a different comeback. “Is it as loud as the Cambridge Ten Pin Bowling?” he could have enquired, knowing that war comes a poor second to that one. Honestly: I recommend against ever going there if you want to have fun, or even a conversation. If you’re a parent thinking of giving a kid a birthday party at one, first go and check out the volume level at the time you’re thinking of. Because a DJ will likely be there, and ruin your great idea, as one did ours.
Yes, seriously. We thought that we were giving middle child a fun time with some of his equally under-12 friends by taking them bowling (his idea). You know, a lot of rolling balls down lanes, talking to each other, chasing after them, bit of cutting cake, that sort of thing.
Uh-uh. We got there and ur, OK, as we walked through the door it seemed kinda noisy for 1030 in the morning. But not people noisy. Pumped music noisy. Oh no, hang on, it’s DJ noisy. Maybe that was his moniker. The noise of some of the past five years’ top 30 hits played for about two minutes each before being rotated onto something else was simply CRUSHING. By the time we got down to the lanes themselves, it was just ASSAULT.
We couldn’t hear each other at all. We had nine children, with three adults (we’d borrowed a parent) trying to corral them. But they couldn’t hear us, we couldn’t hear them, and it’s pretty hard to explain what “you’re next lane up” means to someone who’s not gone bowling before if they can’t hear you and you have to put your mouth next to their ear if what you say is going to come out as anything but “MOO MUB DOR BOR”. Which, looking around, probably applied to pretty much every other lane there. Children having parties. Well, it was 1030 on a Saturday morning.
Not for the DJ, though. For him it was around 2am at the wedding reception of someone who’d asked him to turn the volume up because nobody should sleep through this bit and everyone ought to dance.
Eventually the constant BARRAGE started driving me mad. So I went over to ask if he could turn it down. “We can’t hear our children, they can’t hear us. We’re trying to have a nice time and we can’t,” I said.
“Sorry, mate, but it’s what the parents want,” he replied. The deputy manager, who was there chatting away to him (for they were neatly far back from the sonic onslaught, where you could converse easily in a light bellow), gave me a frosty look too, along the lines of ‘trouble?’. I wondered where precisely it had said on the party setups that as well as party bags and two hours of play that we’d get the hair cells of our cochlea selectively destroyed too.
“Ohhhh,” I said. “So it’s not about us the customers, it’s about you the DJ.” There were conspicuosly zero parents coming along to ask him to turn the volume up.
He said he’d turn it down. If he did, it must have been from 12 to 11. It was still deafening. As we chased children and bellowed food orders and lane changes and imprecations not to run down the lanes and that it was your go now, we became tired, grouchy, irritable even more than is to be expected from trying to look after nine children including a two-year-old intent on escape. This simply wasn’t right. What is wrong, tell me, with simply having a place where you get together and you can hear each other? Bowling balls and skittles make a fair amount of noise. But nothing to compare with the WWII artillery barrage coming out of the speakers there. We had hoped for a tiny bit of enjoyment. None of us got it. All the children found it really loud. None liked it that loud.
My particular gripe with this being that it would be fine to have music at that volume at 6pm, 9pm, 2am. Sure, go ahead. Ain’t my style, but you know, let people screw themselves up. However, at 1030 – in fact up till midday, which is when you’re going to find kids having parties – it seems calculated to give people a serious headache.
And those people include the employees. They have to work in those conditions too, and some of them, we found, don’t greatly like it. Do they get the option to ask the DJ to turn it down? Do they hell.
In fact, I think it would be interesting for an enterprising Cambridge Evening News journalist (say) to take along an Environmental Health Officer with a noise level meter to measure precisely how loud it is in there. Should the staff be issued with ear protectors? Equally interesting, if you went along and asked each lane’s users whether they’d like the music (a) a lot louder (b) a bit louder (c) just as it is (d) quieter (e) off, what sort of results would you get? [I'd point to a specific journalist who's written noise stories, but the CEN doesn't give bylines on its website. Great way to build the brand.. it could be done by robots..]
We didn’t get asked on the way out whether we’d enjoyed our visit. We’d have filled in little satisfaction forms and ringed “no no no no” repeatedly. We’ll not go back; we’ll not recommend it to the many people we know with children who might otherwise take them there. Oh, Cambridge Ten Pin, you screwed it up. Now, hang the DJ.
Afterthought: next year if he wants to do bowling again, then we’ll hire a projector and hook it up to the Wii. The Wii sports bowling is just as good and it’ll be a damn sight cheaper – and quieter. Here, have a look for yourself (though this doesn’t show the fact you have to move your arm about like you’re bowling; click through and try some of the other Wii bowling vids to see that).
The other day we got one of our regular visitors from the Emmeline Centre at Addenbrooke’s Hospital, to see how child3 is doing with his cochlear implant. We gathered in a room and child3 started showing off his favourite book, which is one of the Dorling Kindersley ones – “My First Word Board Book” (because it’s first words, and it’s got board pages, and it’s, um, a book).
Opening spread: two kids, one full-face. “Where’s his eyes?” I ask from behind him, as I do whenever we read this book (which is often: at least once a day). Child3 points to the eyes in the photo. “Where’s your eyes?” He points to his own. “Oyyyes!” he says.
“Where’s his mouth?” He points to the mouth. “Where’s your mouth?” He points to his. “Mowww..”
At this point I offer to make the Emmeline person some tea and ask what she’d like to do in this session.
“Well, he’s pretty much done everything and more that I wanted to test in the first two minutes,” she replies, a bit nonplussed. Apparently distinguishing between one-syllable words – “eyes”, “mouth” – is a key test which they weren’t expecting to do until, say, a year after switch-on. And he’s doing it here after six months. Two thumbs up on that one.
The fact is that child3 is making terrific progress. Which is so scary too. I get worried every time he’s in the bath, when of course he’s deaf again, that he’s going to slip and whack his head, with that so-valuable implant and processor and contact, on one of the taps. They stick out in that pretending-not-to-be-interested way, and they’re at just the right height. It’s scary, really scary.
But then again there are plenty of good, interesting things coming up. For one, the next “tuning” session (when they basically twiddle the graphic equaliser in his ear) will introduce the Advanced Bionics Auria Harmony system, which rather than the 16 channels he presently gets (that is, in theory he can distinguish 16 different tones – if I’m understanding this correctly) will offer 120. It’s like moving from a Stylophone to a grand piano. (Stylophone picture courtesy of PME Records – thanks guys. Pay them a visit – they’re intriguing.)
I really hope it works. It would be so nice to give our Emmeline person less to do.
Though then again there’s always the question of “should we think about a second (bilateral) implant?” Though apparently the best time for that is within three months of the first. So that horse has gone.. But even so, it all remains to be done.
I’m full of amazement and respect for Jason, who (with family and friends) funded his child’s second implant when their local primary care trust (PCT) turned it down; Tom, who had meningitis, lost his hearing, but the first implant got it back, and the second is really getting it back. (Within the limits of implants, which I’ve mentioned before.) Implants are not cheap. You’re talking tens of thousands of pounds.
But I think we’re going into la-la land when we say that to refuse a second implant is a “denial of human rights”, as claimed by a different set of parents in this Wandsworth Guardian (no relation to the Gdn) story.
Two-year-old Oskar Berknov has been profoundly deaf in both ears since birth and had one surgical implant fitted a year ago, allowing him to access sound and to develop language skills. But Oskar’s parents are calling for the PCT to fund the second implant which might allow their son to be educated in a mainstream school environment.
Mr Berknov said: “His ability to learn to talk, to make friends, to be safe in traffic and manage independently in school is all dependent on the directional hearing this implant would allow.”
Sorry, but it’s not. His ability to talk and make friends isn’t dependent on the second implant; we’ve got proof living in our house. (And how would you prove that the second implant is going to do the trick and make the difference?) Being safe in traffic? Might do, but even hearing children aren’t too smart at that one. Children have problems understanding traffic, because they underestimate the speed of approaching cars. That’s not hearing-related.
The lack of a second implant doesn’t hold him back from mainstream school either, because if your child has been deaf from birth then you (the parents) will have a Statement of Special Education Needs (SSEN) which you get written by your health visitor, say, and present to your local authority, which means that your child has a personal helper, and the school installs special gear to help him hear what the teacher’s saying.
The parents have clearly had a hard time of it: they only got confirmation that their child was deaf through a private hearing test, because the PCT insisted he could hear. (That’s not uncommon. I spoke to one parent of an implanted child who wasn’t identified as deaf until the age of three, because she was so good at working out what the testers were doing that they didn’t realise she couldn’t actually hear them.)
But here’s what it boils down to: without a big infusion of money for implants, if you give one child a second implant, you’re denying it from another. And the difference between no implant and one implant is a lot bigger than that between one implant and two. The first is the difference between no hearing and hearing; the second, between hearing and more hearing.
The only way to justify a second implant is to make the case to the PCT that spending that money will save you more than that amount over the life of the child. And that’s really hard to do.
Meanwhile, blogsearch turns up a child in Illinois who has had an implant – no, two – at the age of 7 months. Wow, that is young. And it’s interesting that the insurance company (one assumes it must be) is paying for two, isn’t it?
I’m not saying, see, that bilaterals are a bad thing. If the parents can bear their child to go through it, they seem to bring clear benefits. But it’s a problem when you’re talking about limited public funds.
Jason apologises for not blogging more (durr, it’s part of being a parent, Jason):
Although it is regarded as almost scandalous to say it in certain circles we often ‘forget’ Tom is deaf. The bright blue coils stuck to the sides of his head are still there (complete with a picture of a tiger on one and a monkey on the other) of course so when I say ‘forget’ what I mean is that we don’t have to make any special considerations when we are talking to him. He repeats pretty much everything that is said, to him or otherwise, and his understanding is impressive and subjective. With his potty-mouthed uncle staying with us at the moment, that makes for some risque situations but, luckily, Tom hasn’t cussed at the vicar just yet. He’s at the age where he often chooses to ignore what is said to him because it isn’t in line with his desires – the fact is that most of our daily challenges are based on him being two rather than being deaf.
That’s actually very much in line with our own experiences with child3, who has simply amazed the people who come to evaluate him. Health visitor’s evaluation? “Age-appropriate,” she said. We frowned: “For a deaf child?” She grinned. “For any child!” His speech is improving all the time – there’s hello, bye-bye, siblings’ names (if unclear, he knows what he’s saying, and that’s a key to speech), ‘ock’ (=sock, or sometimes clock), and loads more.
The Teacher for the Deaf is delighted and has cut back on the frequency of appointments. The implant centre’s visitor is almost stymied: “he’s giving a quality of responses we wouldn’t expect to see until he was three,” she said as he dropped Lego into a wastebin to order (it’s some sort of test, apparently). They’re almost out of tests they can do with him at this age; ideally, they’d need him to be reading to do some of the ones they really want to do.
He’s still deaf, it’s true, and always will be. But when he has his processor on, he can hear, and do all the things you’d expect of a hearing child (including ignoring you because he’s found something more interesting, or getting very grumpy about being denied something because he’s rising Terrible Two – which actually starts anyway at around 18 months). It’s as simple as that, really. You could argue that he’s dependent on modern technologies – processors, batteries – and is only a few days’ disruption away from being thrown back to a world without such communication.
However the argument that because something is artificial that we shouldn’t use it to overcome a disability is one that was lost with the first pair of glasses, first pair of contacts lenses, first pacemaker, first artificial hip, first heart transplant, first dialysis machine, first…
If you haven’t been visiting Jason’s blog about his son Tom, well, you’ve been remiss. A stack of stuff has happened, including (and it made me blink some when I read it) a family-and-friends-funded second implant. (Note for those catching up: Tom was born with normal hearing but developed meningitis, which left him deaf – but otherwise OK – at about 18 months.)
It’s going OK, seems like, though the financial burden is pretty scary (if I’m reading it correctly), even with those helpful people.
Meanwhile, child3 is doing well with his single implant. Where are we, coming up for three months? He has what seems to us like lots of words: more, down, hot, meow (for any indication of a cat), baa (for any sign of a sheep), bye-bye (used when leaving anywhere, including a room or shop), and quite a few more I can’t think of just presently. (It’s Saturday evening, come on.) The interesting thing is that he accepts speech and sound as a means to get something done. When he’s had his supper, he wails; “do you want to get down?” my wife asks. “own”, he replies (pronounced like down, without the d; he’s not hot on initial letters yet, apart from ‘b’ and ‘m’). And he’s calm. It’s a big improvement over the normal 19-month-old tantrums you’d get otherwise.
In other medical news, Chris Gulker, who used to write a column for the Tech pages at the Independent – and it was always good because of his Silicon Valley perspective) – has discovered what’s been wrong with his left arm: he has a glioma in his right (brain) hemisphere. See the image on the linked page: that white thing ain’t meant to be there.
I said that his description of how they’re going to fix it somehow reminded me of…
which if you’re not getting it is Spock’s Brain, an episode from Star Trek. Read this page for the synopsis. Seen any mysterious women touching bands on their wrists lately, Chris?