Men and Motors

Tom and Nik found themselves in the magazine aisle of one of our local supermarkets over the weekend. He was offered a choice of comics as a treat for being just so darn cute. His Mum tried to steer him to this:

He was having none of it - and, frankly, I can see why. Justin and Sarah-Jane have always made me nervous while Stephanie... she's just a little too fast for my liking.

So after a little tooing and frowing he came home with this highly commendable pre-school reading:
It wasn't his first choice mind; he had his eyes set on something far more glossy from the high end of the automotive press range.

I'm thinking - forget saving for college fees; what our boy needs is a downpayment on a lockup under some disused railway arches and he'll be set for life. The motor trade for you son (pronounced 'saaaaan' in my best East End) - do your learning in the university of life.

Progress continues - we've got the scores to prove it!

So it's over seven months now since Tom's first implant was switched on and six months since his language was first assessed using the 'Preschool Language Scales-3' (the UK version - the link points to an explanation of the US original).

The idea is that a child's understanding and use of spoken language is evaluated and then compared to a scale derived from a large sample of children aged from birth to just under seven with typical hearing. The results produced give an 'age equivalent' score, comparing Tom to the sample group, for both Auditory Comprehension (does he understand what has been said to him) and Expressive Communication (the quality of the language he uses).

So... how's he doing? Well he's scoring right in the average range for children of his age with typical hearing (and you'll understand why I emphasise that a second time). His 'Age Equivalence Score' puts him at 2 years 7 months; he's actually 2 years 6 months - our boy's ahead! (all dependent on standard deviations and confidence limits of course - I did listen in Stats class).

Proud? You bet. I'm not going to tire of expressing just how marvellous these implants are and what they have done for Tom's life. Charles Arthur, tacking a similar course at more or less the same speed, would hasten to agree. In his latest entry he talks about baby3's remarkable progress with his Advanced Bionics implant after being born profoundly deaf. Interestingly, he's also ruminating on the pursuit of bilaterals - a pathway fraught with no small amount of tension but, ultimately, great rewards.

Its impossible to compare the progress of kids with implants against each other in any meaningful way; different start points, different aetiologies and so many different language experiences post-operatively. This is, of course, why it is tricky to quantify the benefits of bilateral implantation for any given individual - there are just too many factors having an impact on language development - and why any attempt to measure what added benefits Tom's second implant have had over the first is on shaky scientific ground. We're confident it has but the counter-argument goes, he was 'lucky' enough to have had hearing for 20 months before meningitis and was implanted very shortly afterwards. What portion of his success is due to these factors rather than the second implant?

There is no meaningful way of comparing the period with one implant with the bilateral state, not at the age he is. We just see the benefits every day - the way he picks up language almost incidentally, his ever-improving localisation - the 'normalisation' that has occurred. All the considered arguments that appear in scientific publications (and that I described during a bit of a week last July) are being borne out. But then, we had to pay to find that out.

Which is where the PCTs, with their ever-present cash shortages and demands to save money, come in. I wonder which way yours will jump should you ask them, Charles?

'Tomness'

With grandparents living near and far (and when I say far, I mean 'other country' far), the pressure to film Tom (and travel to and fro) is fairly high. We forget quite lot (the filming I mean, not the travelling - we're good at remembering to do that) and Tom isn't really one for cooperating. The moment the camera comes on he usually does one of three things:

• clams up
• grabs the camera or
• demands to see himself on playback.

One has to wait until he's absorbed completely in something else, like admiring his new bed for the first time for example, to capture his essential 'Tomness' - that or film him secretly as they do at AV UK.

Anyways, although this clip doesn't feature a great deal of Tom talking (you'll have to take it from me that he had been shouting incessantly about 'airplanes', tractors, mountains and heaven knows what since arriving at the airport) it does capture something of his character and demonstrates, for any movie directors out there looking for a cute kid with cochlear implants to star in your next blockbuster, that he can take direction.

It also involves me experimenting with a bit of background music, stupid titles and credits. For grandparents and other relatives I am hoping this will be seen as 'cute' rather than overly schmaltzy. Anyone else who happens on this, forgive me.

And, on reflection, he's over three feet high. Damn.

Two Feet High and Smiling on Vimeo

Tom's new bed

We took delivery of Tom's new bed last weekend. It lay in pieces on the landing all week - plenty long enough for Tom to identify that it bore more than a passing resemblance to a racing car and that it needed making and soon.

The morning and evening discussions this week have all featured Tom's express wish that 'Daddy make the racing car soon'. By Thursday Tom had added the impatient exhortation 'Come on daddy!'

I screwed it all together on Friday and the duvet cover that arrived midweek provided the finishing touch. The video below shows Tom's reaction to the discovery of the bed.



Tom's New Bed on Vimeo

We didn't hear from him at all this morning - about 9am we decided that we ought to see if he had any intention of getting up. To say he was happy to go to bed this evening is taking understatements about as far as they dare go.

A successful transition to a bed? I think so.

Garry Tractor

Yesterday evening I stood Tom on the front windowsill to watch Mummy drive away.

'Mummy won't be long. She's going to see the chiropractor' I said, by way of explanation.

Pause. Thoughtful gaze out of the window.

'There's a bus!!' Tom shrieked excitedly.

More thoughtful pausing.

'Mummy gone to see Garry Tractor. In the field!'

The obsession with all things vehicular runs deep. I love the fact that he doesn't question why Mummy would be going to a field at 6pm to see a tractor. That's what he would do if we'd only let him out of the darned house!

Otoscopes and Electrodes

Another day, another appointment - this time with the Eminent Surgeon who implanted both of Tom's CIs. It was a routine follow up, well as routine as such things are when we're talking about sophisticated electronics embedded into children's skulls. Any examination amounted to little more than a peer into the ear canal using his otoscope.

Tom decided that, for reasons best kept to himself, he would deign to allow the surgeon to stick this rather odd object in his ear. Whether this is a sign of his burgeoning maturity (he is, after all, two and a half now) or simply resignation to the inevitable I don't know. What does appear to help though is one of the most useful tips we've received. It is also one of the most blindingly obvious, forehead-slapping-while-exclaiming-'Of-course!' pieces of advice that has come our way too. It is that straightforward that I feel very dumb admitting that I actually needed it spelling out for me but, hey, I have a number of excuses lined up.

To make our life much, much easier we take time to tell Tom 'the plan'. No point in hiding the stuff he's going to dislike and springing it on him at the last minute (we tried that - Tom thinks that sucks), we share the bad news and also tell him the good bit that comes after. So, in this case, we told Tom that we were going to see Mr Gibbin who was going to look in his ears. He then repeated this back to us for the next 30 minutes at 10 second intervals, occasionally pondering whether this would involve going in daddy's noisy car and why we were seeing Mr Gibbin at Tracey's house ('Tracey's house' being the Implant Centre where Tracey, one of our audiologists, works).

In the grand scheme of nasty treatments that Tom's been through, having an otoscope delicately placed in his ear canal is small beer. He still made the Eminent Surgeon, a man not lacking in gravitas, examine the ears of Lightning McQueen, Sally and Ramone before his own. Now that was funny.

What wasn't so humorous was the confirmation that one of the electrodes in Tom's left implant needed to be switched off. The audiologists identified atypical impedence readings which have finally been diagnosed as a short circuit. Demonstrating his uncanny knack of being at the wrong end of long odds, Tom is only the third person out of 2000 implanted to have this happen with the Advanced Bionics device.

The upshot? Well, there's been no dropping off in the pace of Tom's language development and he still chooses to ignore us when he feels it appropriate. The redundancy built in to the device is designed to cope with such occurrences and, with improvements such as the Harmony System now released, there isn't much cause for alarm. As long as this isn't the start of something.

The appointment's most memorable moment, however, was so enormously positive that it left the electrode news deep in the shade. While watching Tom bounce around and talk incessantly to Nik and I we overheard the Eminent Surgeon say, in an aside to his registrar, 'You just can't tell he's deaf!'.

That is what he, and this technology, have done for our son.

Visiting the bank

So we were in the bank. We'd brought along a portable DVD player to distract Tom and he'd settled down on the floor to watch 'Cars' for the 52nd time, occasionally kicking the bank advisor's shins absent-mindledly when things got exciting.

As is fairly typical, particularly when you're fairly confident about what happens next on screen, Tom's mind seemed to wander. On those rare occasions when he watches TV (!!!) he is wont to make thoughtful requests as random desires come over him. Musings in the past have led to 'Chocolate' or 'Cake'. In the bank however, his mind went elsewhere. He stood up, raised his chin slightly in my direction and asked 'Daddy get bogey'.

Something of an icebreaker don't you think? Clearly it would have had more effect (and made a better story) if he'd asked the bank advisor guy to remove said bogey.

What I should have said rather than the slightly middle class 'shh.. not just now'? 'Ask mummy, she's got much longer nails'.

Back to the old routine

For a glorious three week stretch through the middle of January Tom has been professional-free. Following a tuning session with the audiologists on the 4th, there were no early morning motorway excursions down to Bicester therapy sessions; no psychological torment in the QMC’s bizarrely obstructive multi-storey car park and no house callers armed with ring binders and bags stuffed with aurally challenging toys. Strange times: no ‘interventions’, no assessments – just us.

This hiatus came to an end with a visit to the nursery/infants that Tom will start attending in September – an occasion that succeeded in being both curiously reassuring and intrusive simultaneously. We draw strength from the affirmations of Tom’s progress that generally accompany the appointments; concerns accumulate like weeds in the kitchen garden and, while we’re both becoming more accomplished with the hoe, they keep coming back and expert advice is required.

So we met up with the marvellous Tanya, Tom’s Teacher of the Deaf, for an appointment with the school’s new Head teacher to discuss the preparations required for Tom’s arrival. The impact our son is about to have on this school is multi-faceted and will include training for staff on the more practical aspects of dealing with our wired-up bionic boy, the potential adaptations to the fabric of the building that should make it easier for Tom to hear and possible support provision.

The school, thanks to Tanya’s forward thinking and organisation, is ahead of the game and I came away reassured that things will be OK. Now, a few days on and with wearying predictability, there has been a stirring up of emotions. Between Nik and me, it’s safe to say, there are a surfeit of emotions and their stirring up is a fairly frequent occurrence. Some of them are predictable anxieties tied up with transitions and the thought of our baby going off to school; the sort of every day anxiety we like to wallow in, celebrate and adorn with associated worries such as ‘must get the little blighter potty trained’, ‘he will NEVER sit still’ and ‘he’s too little!’.

Others, though, are a little more specific and, for me at least, hark back to unspoken expectations about my son and his glorious progress; a triumphant, joyful, painless romp through childhood featuring a modestly worn yet undeniably keen intellect, prodigious sporting talent and an ever-present smile.

This vision did not include support teachers, nor did it include a strikingly obvious difference that marked him out from day one. The tale I had woven for Tom is typical parental aspiration - the emphasis was on triumph and there was a noted absence of adversity.

We have met and continue to work with some talented, caring people because of what has happened to Tom. They have an enormously difficult task to do because, of course, we would rather have never met them. If we’d gone through life with only a vague understanding about the devastation that meningitis can cause and the impact of deafness on a child’s life then, let’s face it, we wouldn’t have worried too much.

The way it is though, Tom’s implants are working – his understanding and his spoken language is flourishing thanks to these audiologists, therapists and teachers. As Jacqueline Stokes tells us every time we see her, he is a clever boy and is going to flourish. The bigger challenges, I think, are social and, rereading this, making sure his dad doesn’t fuck him up in an appropriately Larkinesque way. The last thing he needs is the baggage of my expectations.

The Dreaded QALY

I mentioned some time back that Professor Quentin Summerfield would be giving a twilight lecture on the subject of bilateral implants in the context of the British National Health Service. It took place on the 25th January - there is a rather crumbly recording of it on the Ear Foundation's Recent Twilight Lectures page.

It is a balanced, highly rational and necessarily impersonal description of the factors that influence who should get a cochlear implant (or two) and how the decisions are arrived at. Prof. Summerfield gets quite mathematical as you might imagine and it might take you a couple of run-throughs or frequent use of the pause button but he is heavily involved in this stuff - you can safely assume that he knows what he's talking about.

Much of the discussion centres around the QALY - the Quality Adjusted Life Year - which is an attempt to measure the impact of medical interventions on both the quantity and quality of life resulting from said intervention. By throwing into the equation the cost of the interventions, the 'Powers That Decide Such Things' can make informed choices about which procedures to fund and to whom, based on their cost-effectiveness, i.e. it is the cost per QALY that is used to prioritise across treatments with a threshold of €50,000/QALY as the upper limit for consideration. The more QALYs you can create on your budget, the better.

Single cochlear implants to both children and adults, you'll be glad to hear, fall safely within the threshold for cost-effectiveness but bilaterals for adults most definitely do not. The cost-effectiveness of bilaterals for children, you'll notice if you get that far in the lecture, is unknown. Beyond positing that its likely to be higher for children than adults because of the expected impact on educational costs and relative lifespan, Summerfield cannot say although he does go on to describe the research that is about to start in the UK that will inform the calculation.

Why am I revisiting this and what does it mean for Tom? Well, I can't get this QALY thing out of my head and it has reawakened the medical researcher in me that has lain dormant for a few months. Exploring, for example, how a measure is put on life quality (there are numerous ways apparently, including the EQ-5D) is one new preoccupation. For the most part though, I just think about what impact the research and ongoing NICE project will have on us and Tom's future.

Something else that's unclear, unresolved and needs waiting for... ain't that just the hardest part?