Thursday, July 27, 2006
On the 1st August we go before an appeals panel. We have half an hour to explain why our son deserves to have a second implant when the Primary Care Trust’s policy is to provide funding for only one. Whatever we present in terms of our interpretation of existing evidence, the proverbial elephant will be sat in the middle of the room that the panel will be doing their best not to mention.
It all comes down to money and an ever-thinning argument relating to lack of evidence.
Studies on bilaterally implanted children are unsurprisingly few and far between at the moment and they have focused on neat audiological outcomes following closely after the surgery has taken place. Due to the extended time it takes for a scientific study to make it to the exalted status of ‘peer reviewed’ and journal publication, these short studies are all that have made it to print. The extended studies – remember we’re talking about children here; the type that can’t concentrate or get bored when being subjected to laborious scientific testing; the type that keep growing and learning, darn their cheeky little hides – are ongoing and are reporting fantastic results at conferences across the world.
The PCT will be thinking ‘this treatment costs too much’ but they can’t refuse treatment on cost alone – it has to relate to its cost-effectiveness. A single implant, when compared to none at all, falls within accepted boundaries when its QALY (Quality Adjusted Life Year) measurement is calculated, according to the one published cost-effectiveness study I can find (which is based on Adults, incidentally, who rarely score as highly on such measures having thoughtlessly squandered assorted chunks of their lives before the auditors could come along and value them). How much a given treatment improves or extends your life is the subject of an equation – an equation that can be calculated in lots of ways depending on what you choose to include or exclude. Which of the many possible or probable state-costing services will Tom need to take advantage of if he doesn’t get a second implant? How much of a gamble are the PCT willing to take? How many of them are they willing to take into account?
Does it take into account, for example, the increased likelihood of Tom needing expensive adaptations such as FM systems in all the classrooms he will visit over his full school career? How about the extent of learning support or transport costs to a school with a deaf unit or a special school? The education department are likely to have to shell out for a taxi twice a day should this eventuality come to pass, never mind the considerable increase in cost incurred by Tom attending a special school or requiring intensive learning support. Judging by the conference presentations and testimony of numerous parents, the potential difference is huge. With two implants, there’s a very real probability that Tom will need no educational support for his hearing at all. Social Services and Education have a term for the desired outcome of intervention – ‘normalisation’. Never has normal sounded so good.
How will Tom’s increased risk of poor mental health be factored in to the equation? Tom remains profoundly deaf in his left ear all the time while his right has been restored to a state described as moderate hearing loss when his implant is switched on. There is plenty of evidence of the increased communication difficulties and subsequent isolation that leads all too frequently to misbehaviour and mental health problems for children who fit this profile. For all the positivism surrounding our son’s progress thus far and our determination to ensure that nothing but the best will do, these are the sort of facts that keep me awake at night.
For every great, heart-warming anecdote about how successful a deaf person can be in this hearing world there’s a mound of statistics that suggest the truth is somewhat less rosy.
Check out the RNID’s recent employment survey for example, or this article on educational outcomes.
An ever increasing number of countries across Western Europe including Norway, Iceland, Sweden, Germany, Spain and Austria are already convinced enough. Several give bilateral implants to all suitable children while others, including Scotland, ensure that the most pressing of cases, those post-meningitic children prone to ossification, get both ears done as soon as possible.
So why do these countries accept that children will perform better with two ears than one? Have they accepted a lower threshold of proof or do they place a different level of emphasis on how much hearing is worth to a child?
I don’t believe for a second that our PCT really thinks that Tom, or indeed any child, is undeserving of a second implant, or that the jury is still out on its benefits. I’m also sure that they’re not in the business of deliberately adding to the stress and pain of fraught families who have been through the mill. I do think, though, that they’ve got their fingers in their ears and are singing ‘la-la-la I can’t hear you’ at the top of their voices with regard to the evidence. It’s just a matter of a few months or years before much more material is published and, if they stick to their criteria, they have to reconsider their policy.
Unfortunately, that’s way too late for us. Tom had a shadow on his MRI that our consultant took to be the early stages of ossification – his window of opportunity for gaining maximum benefit from a second implant is closing rapidly. In fact there’s a slightly larger window swinging slowly shut on all deaf children; the longer the auditory nerve pathways aren’t stimulated on the unimplanted side, the harder it gets until, eventually, some other opportunistic part of the brain spots the neural capacity going begging and says ‘I’ll have those’. And there goes the opportunity.
So we may get answers to some of these questions on the 1st. Actually, we’ll only get the one answer and the key part of it will be rather short and to the point.
Think about us.
Friday, July 21, 2006
Forcefully delivered, uncompromisingly direct and usually accompanied by a furrowed brow, ‘Out’ has been Tom’s instruction of choice for some months, dating back to the hazy pre-meningitic days when we sometimes said no to his insistent requests. He has found a broad range of uses for ‘out’ – indicating his desire to leave the house, extricate a favourite car from a toy box tangle, get at food in a container or opening a cupboard door. It’s a useful word when you’re not quite two and issues of correctness just don’t figure – it gets your point across and usually delivers results. We did what I suspect most parents did; chuckled indulgently at how cute our oh-so-serious son was and did his bidding, more often than not mimicking him. There was plenty of time for building the correct vocabulary later. As it turns out, we were right but not without it looking highly unlikely for a time.
Yesterday I got home from a day in London and called ‘Hello Tom’ from the kitchen doorway. Engrossed in a game with his Granny and at some distance away, Tom didn’t respond. Of course he didn’t, he has had his implant barely a week and is almost certainly unable to distinguish between voice and noise at any distance. But we know this will come because we’ve seen what he can do already.
‘Tom, look it’s daddy’ says Granny, who’s kneeling on the floor. She’s at his level and near the microphone, situated in the coil magnetically attached to the right hand side of his head. He looks up to her and then turns round; no visual cues have alerted him to my presence. He’s heard and understood and responded. Then he does what every father loves and comes running to me shouting ‘Daddy!!!’ with a big smile on his face, demanding a cuddle. You just can’t beat that.
Tom is keen on cuddles. I don’t doubt that there’s a seed of affection in there but he’s not above a bit of exploitation when he’s got the parent of choice in his emotional grip. Cuddles bring with them a height advantage which enables the scanning of normally invisible kitchen surfaces and access to handles of unsecured cupboards. He knows this is where we keep the good stuff and we can’t help but find this deviousness endearing.
‘Apple!, ‘Suma!’ – his eyes alight on the fruit bowl. Picking the Satsuma up, he offers it to me and says ‘peel’. Clear as day. No more the ubiquitous ‘Out!’; in with the sophisticated, food-specific ‘peel’. I sense a Granny at work.
Like any good servile father I do as I’m bid; vainly try and restrict how many segments are crammed in his mouth at once and then watch in amazement as Granny’s request for Tom to ‘put the peel in the bin’ is followed to the letter.
The Cochlear Implant Team and our Teacher for the Deaf have all, in the gentlest and kindest of manners, encouraged us to round our expectations down.
‘These things take time’
‘He needs to get used to the new sounds’
Tom doesn’t appear to agree. Just as he’s taken to running and trying to jump while his balance is still off (he corners like a drunk – imagine one wrist tied to a tent peg and trying to run away in a Laurel and Hardy style), Tom has decided to carry on talking. As far as his expressive language goes, he’s picking up three or four new words a day while his receptive language is developing too as the bin and daddy examples show. The implant is working – it’s allowing Tom the access to sound he needs to do what all toddlers his age are capable of; the phenomenal, sponge-like acquisition of language.
So we’ve had a bit of a flyer out of the blocks. Tom started from a really strong position; he had a fairly large vocabulary for a child his age when he was deafened, the period of silence was relatively short at three months and he kept using most of his words throughout that period. On top of that, after periods of helplessness and waiting, we finally had a concrete way of helping and so sought out the best advice we could.
Answering ‘Nottingham’ to the ‘where did you get your implant done?’ to most people in our new Cochlear World and the response, sometimes tinged with a little envy, is invariably positive. They’ve been implanting children longer than anyone else in the country and have done more than anyone else. Read the research papers and the same Nottingham-based names crop up over and again. These are guys with an enviable reputation and we struggle to fault the care we’ve had. That praise extends through to our marvellous Teacher for the Deaf, Tanya Sorrenti.
For us though, the softly, softly approach to therapeutic aftercare didn’t feel like enough. A simple message from my teaching days loitered in my mind:
‘High expectations, high achievement’
Tom was born to talk. To watch him enthusiastically take up signing provided further proof. We had to give Tom the very best and expect great things. We hunted around for inspiration and discovered the John Tracy Clinic. Based in LA, the clinic offers free correspondence courses to the families of deafened children. These explain and offer methods of helping children develop language and monitoring their progress. The first lesson arrived last week and it looks good; it offers a structure and, more importantly, a brand of undiluted enthusiasm that the Americans do so much better than us.
This week also brought our first session with Jacqueline Stokes of AV UK. Based near Oxford, Jacqueline and her team are pioneers of auditory verbal therapy in the UK; an approach to teaching deaf children the skills they need to listen and acquire language. Based on one session and a viewing of its video recording, I believe Jacqueline may be on to something. I have never been told off that much in 20 years but to see the attentiveness in Tom’s face and to witness the results as we’ve followed her techniques – what’s dignity for anyway?
The implant has thrown him back into the noisy, chatty world and he loves it.
Thursday, July 20, 2006
Monday, July 17, 2006
I think you can get a fairly clear impression of the sort of weekend we had by mulling over the following overused phrases:
- 'Can you hear the .... Tom?'
- 'Did he use that word before?'
- 'Pass the suncream'
- 'Your ear's fallen off again' (the neighbours must have puzzled over that one)
And what was Tom saying during this time? Well, all manner of mumbled stuff through his dummy. Oh, and 'Dummy!!', of course, when we took it off him to try and hear what he was saying.
That darn thing has just got to go. I don't know what we were thinking; our son comes round from a coma, asked for a dummy in a hoarse croak (brought on by being intubated) and we just crumbled like the weak, ineffectual parents we are. It's enough to give Gina Ford conniptions.
By Sunday the parenting and grandparenting collective were pretty convinced that Tom understood the word 'wee-wee' - having announced it after peeing in the garden and attempting to mop it up with Granny's shirt. I would've let him as a reward but the proposal was vetoed.
There were numerous other clues that Tom was enjoying the experience; musical toys got alot more attention, squeaky doors just had to be opened and closed over and over, the 'bang' that colliding toy cars made just had to be shouted to the hills. The 'eyes well up' moment came for me when we opened a farm animal book, I asked 'Where's the duck?' and Tom's finger went straight to it, accompanied by a very satisfying, very endearing and quite resounding 'Quack, quack!!'
Saturday, July 15, 2006
'Well, yes - he just doesn't know what he hears'
This is a fairly close approximation to the question I was asked numerous times yesterday evening and the stock answer I honed with practise. Family and friends had all been waiting for the second of Tom's initial 'switch on' mapping sessions yesterday morning and were desperate for positive news. I didn't feel able to explain how we had watched and played with curious apprehension as the dynamic audiological duo, Kim and Mark, had run through their various routines. This is my attempt now.
Tom arrives at the soundproof booths with a heightened sense of anticipation now, having discovered that Assessment Centre's stock of toys runs to a parking garage and a considerable number of cars. Having scoped the joint on Thursday, he made a beeline for the garage's hiding place the moment we arrived on Friday and demanded its retrieval. Within seconds he was installed at a table with everything set out before him and ready to go. Aware that windows of cooperation have to be seized on with toddlers, things got under way pretty quickly.
To the uninvolved eye, the process of mapping a cochlear implant has more than a degree of hypnotic tedium about it. The transmitter on the subject's head is connected directly to a computer and a series of impulses are sent to stimulate one or more of the electrodes coiled neatly inside the cochlea. A series of beeps is provided for the 'audience' to make them aware that stimuli are being applied. And that's kind of it - over and over at different frequencies and different intensities - while the audiologists and parents just stare intently waiting for an outward sign that something is being registered. Cochlear Implant mapping is a spectator sport and, like going to watch greyhound racing, its only really of interest to the aficionado or those who've wagered their shirt on the outcome.
To stretch the 'mapping as a trip to the dogs at Catford Stadium' metaphor a little further, the aficionados see things that the average punter completely misses; the baulk out of the gate, the hint of lameness. In Tom's case, this amounted to almost imperceptible eyelid flutters in response to certain intensities of sound and elongated pauses during his play. While I was busy hunting for the next chocolate drop bribe, Kim, with Mark behind the mildly intimidating one-way glass, were noting these subtle responses. They appeared satisfied with what they saw while Nik and I, the average punters , needed something a little more concrete to convince us that the magic had started.
Thankfully, it came.
For the final phase of testing, all Tom's electrodes were switched on and the stimuli were sounds played through a speaker rather than impulses transmitted directly to the array. As soon as the first sound came out Tom turned, looking for the source. He was back in the hearing business, we could go home content.
That, however, wasn't to be the end of it.
During a short session with Amanda, an implant team speech therapist, Tom got his hands on a keyboard and started plunking away. We've watched with choked sadness over the past few months when he's played with musical toys at home only to discover that, seemingly, all their batteries have gone dead at once, and quickly lose interest. Not this time; he belted away on the keys, sounding to us like Bach, Jerry Lee Lewis and my drunk brother-in-law all rolled in to one.
At the end of his short recital he looked at me, pointed to the side of his head and said 'Ears!'
Thursday, July 13, 2006
And, when I say 'side of his head' I'm referring to a sophisticated receiver coil (three turns of gold wire I believe) sitting in a drilled out recess of his skull just under his skin. I'm not sure I'll ever get used to that.
So Tom has taken his first tentative steps back into this world of sound - actually it's more like he's hovering in the doorway. The audiological team spent around forty minutes with Tom plugged in to the software running a series of initial tests to make sure the electrode array was all tickety-boo followed by a behavioural test with the dancing toys in boxes at the sides of the room being lit up as a 'reward' for hearing the sound. The boy's been through this one on a number of occasions over the past couple of months and has started checking the boxes every once in a while just in case the nodding dinosaur should show its face.
Incidentally, Tom referred to the dinosaur as a 'ribbit' - a generic term applied to pretty much all things green. I haven't the heart , or the necessary signing skills, to correct him.
The first session ends with Tom in his comfy harness with a neat, under-the-arm holster for the processor. After the initial bribery required a couple of days ago (we've really spun out the Easter eggs this year - comes from spending a large chunk of the spring in hospital) we've had no objections to the coil and associated gadgetry. That is, except for a neat reversal of the 'no coil, no dummy' blackmail - my failure to deliver a desired piece of fruit led to Tom responding with 'no satsuma, no coil'. He catches on fast.
As for hearing anything or responding to sound? Nada. The processor is turned on at the equivalent of little more than a loud whisper - we're back in today for further, more precise 'tuning' - and there's a significant amount of adapting for his brain to do but you hope to see something, don't you? Importantly, Tom's happy with wearing the kit and has been the model of cooperation thus far so we haven't had any extra grief layered on top of the base level of stress.
Which reminds me, we still haven't stocked up on satsumas.
Wednesday, July 12, 2006
Charles on...anything that comes along is the blog of Charles Arthur, Technology Editor of the Guardian and, as one would expect, he writes fluently about baby3, his profoundly deaf son (amongst a bunch of other stuff as the title suggests). With baby3 having his implant 'switched on' today and Tom tomorrow, there have been some interesting comparisons during our parallel experiences. Looking forward to reading more about baby3 and his passion for singing.
I think it was Charles who directed me to this article about one implant user's Bionic Quest for Bolero - a personal insight into the technological wizardry at work within these CI Corporations and research hospitals and how bright the future could possibly be. Although not strictly a blog (I just liked the title for the entry) Michael Chorost, the author, has his own website where you can read the first chapter of his book, Rebuilt.
A recent discovery is cochbla which is the blog of Josh Swiller, a fast talking (I imagine...you read his blog and tell me if you think he talks fast), implanted New Yorker who has started getting writing gigs on the back of his blog and this article, Turning Up 'American Idol'.
There are plenty of us out there - here are a couple of other parents eloquently sharing their family's stories:
Jack's Story - intersting from the perspective of bilateral implants and the trend in the US. Must bring that one to the attention of my PCT...
Bionic Boys - an interesting back story and perpsective, particularly with regard to other people's reactions.
Monday, July 10, 2006
Who knows whether Tom would have developed all these bedtime stalling tactics anyway? The final bottle of milk has been pushed back until he's actually in bed now and is has to be drunk in stages, several of them necessitating my return to the room after the final goodnight. This repetitive delaying strategy may also be the cause of some children's love of books - Tom always thinks there's time for just one more.
The mysterious mind
It is now only days until switch on - Tom will only have been 'silent' for three months or so - but in that time we have seen our son achieve so many things that leave me in awe. What a baby's mind is capable of...this potency really needs to be harnessed and used to achieve something. We should hook them all up while they sleep - just like that Seti at Home project. Don't think of it as cruel exploitation - babies fully approve of slavery anyway. Just ask any parent.
I'm struggling just to keep up with the signs he's learning - I blame that Mr. Tumble fellow - a few minutes in front of that and Tom is off and running. He is just so desperate to communicate and he's seized on this new method - not knowing that the rules are just about to change again. He'll cope - far better than we do I suspect. The secret is to just keep expecting more; cut through the 'lowering of expectations' crap that professionals seem to opt for these days.
As you may be able to tell, I'm still riding the emotional rollercoaster. Today has been an 'up' day.
Wednesday, July 05, 2006
The list of words he seems to have forgotten is reassuringly short hinting to our highly suggestible minds that, after implant ‘switch on’ next week, these three silent months will be reduced to a minor developmental blip during Tom’s journey towards being an eloquent raconteur with a vocabulary to shame Stephen Fry (and I’ve allowed for a three-four year monosyllabic retreat into his fusty teenage bedroom). Such medical-advice-defying optimism is dangerous territory of course but is all part and parcel of our experience of parenting through a life threatening illness.
The ‘resting state’ emotion is slightly more pessimistic than this and, while the curve for us is generally upward, days are still peppered with the occasional lost moment where tears rapidly surface or a more debilitating descent into fear-filled anxiety. There are all sorts of triggers that set us off; we hear fragments of nursery rhymes as he sings himself to sleep, we don’t call his name any more when he starts to wander off and there have started to be occasions where he signs without speaking. There is a sense of grief (for want of a better word); telling yourself it’s only temporary doesn’t always do the trick and the bottom line is that, without the bionic ear, he is now profoundly deaf. Luckily for us, we haven’t hit such periods simultaneously for a good few weeks and there has been a ‘strong one’ to describe Tom’s rapid recovery and the life-affirming happiness he so evidently feels. He is so irrepressibly cheerful and won’t countenance his parents trying to be miserable.
It’s now over 10 weeks since Tom was diagnosed with meningitis and this is the first extended period of what can best be described as our new ‘normality’. I’m back at work where they thoughtfully ‘saved’ me lots of things to do, Nik is on extended leave from work and Tom, insistent on communicating, is acquiring sign language. As might be expected he has focussed on things that are important to him so cars, trains and various items of fruit are vigorously described. No gender imprinting there then. How far the signing goes, though, is debatable. Our rose-tinted view of his future involves mainstream schooling and the ability to communicate directly with whomever he chooses. The pathway to achieving that end is unclear and the subject of more than one expert (and not so expert) opinion - as if there wasn’t enough to deal with already.
At the moment we’re keen to explore most anything and have heard nothing but praise for AVUK – sole purveyors of Auditory Verbal therapy in the country. We’ve also had the John Tracy Clinic in Los Angeles recommended to us. It’ll keep us busy whatever happens…