Happiness is a Car-shaped cake

On Saturday my parents came over for a barbeque. They brought a cake for Tom because the old man had seen it and couldn't resist. And because they rarely have to deal with the consequences of the sugar rush that follows.

They don't have to buy Tom's affection through the provision of Lightning McQueen-shaped gifts but clearly figure that there's no harm in shoring up their stock once in a while.

Anyway, I couldn't decide which picture best captured the essence of Tom's excitement so I thought I'd leave it to you and see if it drums up a few comments.

And to pre-empt the anticipated questions; yes that is a knife he's brandishing. Mum and Nanny are just out of shot, ready to head off any manic activity...

The mouth was consumed first, then the headlights and then the wheels. The sponge is something of an after thought; Tom is happiest just working through the icing. That's where the biggest buzz is.

Smile, darn it, smile!

I asked Tom to smile for the camera - it looks like he's forcing himself manually doesn't it? Note the sticker chart on the door in the background - that's Tom's 'pee in the potty' reward system. He's being a smart little cookie and he has just about got it. He has become king of the precautionary pee and, at the slightest internal urge, called for the throne... only to produce a teaspoonful.

Tom can...

We're in the midst of potty training. Lots of positive reinforcement is going Tom's way; cheers and stickers whenever a performance is made (sometimes while silently gagging - we really need to look at what we're feeding him) while a soothing, blame-free 'Oh dear' greets the accidents. This has led to a number of words being added to his vocabulary including the sing-song 'never mind...' that accompanies Nik discovering pants full of poop and 'Tom-tom PUMPED!' (a phrase that fully deserves its resounding triumphalism).

So, while watching my son's gait transform from padded waddle to snake-hipped jaunt. I had one of those disappearing childhood sensationss. I began to ponder on all the things that Tom is nailing at the moment and it filled me with smiles so I had to share.

• Tom routinely puts his coils back, giving them a reassuring pat when they're in place.
• He's pretty adept at putting DVDs in the machine and gets frustrated with the endless trailers.
• He knows that bogeys, burps and pumps are all hilarious but is not quite the judge of 'context' that he might one day be (hopefully).
  
• He knows that riding up front is far, far better than being strapped in the back of the car, no matter which way you dress it up.
• He knows that watching TV in bed in the morning beats getting dressed and hurrying anywhere...
  
• At the weekend, while playing in the garden with Joe-from-next-door, there were times when their running gait looked the same. Tom's balance is improving enormously (thanks Deborah).

Nothing reflective to say about all that really - it's just a joy to watch him grow up.

Bike story

The road that we use to take Tom to his childminder's is closed. Due to the freakish nature of the road layout and traffic patterns that you don't notice until such things happen, this turns a five minute 'nip in the car' into a 45 minute journey of log-jammed commuter hell.

The work is scheduled to last 12 weeks.

The preferred option has become cycling. Tom has a chair that can fit on both our bikes with well-designed Scandanavian ease (it even has a Norwegian flag) and he perches up there behind us, bouncing merrily over the poorly surfaced roads that you never quite felt before.

After two weeks the novelty is wearing thin for Tom. In the morning and when picking him up he optimistically inquires 'Going in daddy's car?' and looks mildly crestfallen when the answer is in the negative. Clearly he cares not a jot that our fitness is improving enormously as we cut a dash through the local highways and byways. He's a little fed up of the whole pre-flight rigmarole with the fleecy beanie hat for holding his implant coils in place and the straps of the cycle helmet which mess with his whole personal space thing. He has recently developed some firm opinions about such matters.

The point of this story, other than adding to the wholesome family image I'm trying to build up, is that I talk to Tom while we're cycling along. I say talk; I call over my shoulder and Tom, occasionally, responds. Not to every word - stuff gets lost on the breeze or isn't easily interpreted but he hears some of it. Arms are snapped out sideways when I say 'lets be aeroplanes!' and negotiations about sweets begin when we ride past the corner shop.

Under his fleecy hat and cycle helmet, out of sight of my mouth and with the breeze blowing Tom can hear me. And that's pretty cool.

Conversations about cochlear implants

I’ve been talking to people about cochlear implants this week. No surprise there really, although I am being a little more selective and trying not to instigate such conversations with everyone I speak to. I think it particularly unnerves the guys in the sandwich shop. I am jesting – I have it much more under control than that. I hope, anyway.

Yesterday’s conversation was a telephone interview with a reporter from Trent FM, a local commercial radio station. Well informed on all matters cochlear, Matt the reporter asked some fairly searching questions, my rambling answers to which have been sliced and diced into some semblance of usefulness and was put out on the air in news bulletins during the course of yesterday. I have no real idea how it turned out as I was in meetings in London all day but the nagging suspicion that I sounded like a buffoon lingers. Nik assures me that I didn’t and they even used some excerpts of Tom chatting in these video clips so I’m sorry I missed those.

The questions were fairly wide ranging although the focus – the bits that stand out most prominently in my memory at least – concerned matters of cost, bilateral implantation and PCTs. I have no idea which sentences made the cut but I didn’t envy him the task of trying to make sense of my tortured, multi-clause ramblings.

One thing I did try to include in my answers was the whole issue of habilitation and speech therapy, a topic that was at the forefront of my mind following a visit to AV on Monday. The media coverage of cochlear implants tends to focus on provision and cost; who’s got one and who’s got two; which Primary Care Trusts (PCTs) cough up and which don’t. I’ve been guilty of the same. These are the emotive subjects that have an immediacy people unfamiliar with cochlear implants can grasp and, hopefully, share in our outrage. But getting the implant is far from the end of the story.

Access to long-term, high quality speech and language therapy is of vital importance to the successful use of cochlear implants, particularly for young children. Inside ‘the club’ we understand that but access to it isn’t guaranteed. It’s another area subject to local variation in state provision. It is something that is also hugely dependent on parental involvement and commitment.

We haven’t had much cause to complain in this respect because, for a change, we got lucky. Tom’s Teacher of the Deaf (from the Local Education Authority), Tania Sorenti, is fabulous in every respect. The Meningitis Trust have assisted with the expense of additional therapy via Auditory Verbal UK; a group of people who, I think, should branch out into parenting courses such has been their impact on us as a family. Tom continues to be a happy, fun-loving and largely compliant two year old. While he is clearly blessed with fabulous genes from his mother, I’m certain that the clear messages he gets from us contribute to this. We use spoken language to plan, negotiate and defuse and it’s paying off.

At the weekend we watched while Tom tried out negotiating for himself with the son of some good friends of ours. In an attempt to regain possession of his beloved ‘Lightning McQueen’, Tom found another car lying in the garden, took it over to Patrick and asked him to swap. No attempt to snatch or wrestle the car back, just language. Patrick was having none of it, of course – he too is in thrall to the Power of Pixar – but we were very proud and are now building Tom’s skills further such that he will offer strictly time-limited loan schemes. I fear a future in politics in the offing.

We couldn’t imagine doing any less for Tom. The feeling of utter helplessness that is experienced when your child is beyond your care is something I never wish to feel again. Everything we have done since then has that time, that period in our family’s collective past, as a counterpoint. We are seizing every opportunity to ENable our son, to enrich his life and to make sure his deafness has no detrimental impact. The profound side-effect is that he is become increasingly eloquent.

Rob Rummel-Hudson mentioned ‘Holland’ a post or two ago; a poem that attempts to prepare parents of disabled children for a world of different expectations. He came to a conclusion that I would have to agree with, having myself gained initial comfort from the copy of that poem that is pinned to the wall of PICU in Nottingham’s QMC. Tom wants Italy and he shall have it.

A Year to the Day - posted a little late

This pic was taken on the 22nd April; a significant date in our diaries now as it marks the day Tom was admitted to hospital. This year we took the decision to fill the day with about as much fun as it could take which meant 'Sundown Adventureland'!!

What do you mean you've never heard of Sundown? Why, it's only the premier amusement park for the under fives in the whole of the North Nottinghamshire/Lincolnshire border region. Imagine if Walt Disney had been born in Retford with a sight less ambition, less access to prime real estate in the sun and a lacksadaisical attitude to fibre-glass care and you might be getting close. Tom, and many toddlers besides, doesn't care. To coin a phrase borrowed from my eloquent neighbour's description of 'In The Night Garden', Sundown is baby crack.

We had a great time and set ourselves a tradition for future years.

Spin the wheel and place your bets...

And so it goes...

Nicky received a phone call yesterday that left us both delighted. The fact that it also struck a particularly raw nerve makes it worthy of comment here. Another family in the CICS club that we have come to know had just been through their bilateral implant appeal hearing. Their son, deafened by meningitis at the age of eight and implanted (on one side) for a year and a half or so, has been given the go-ahead by their local PCT (Primary Care Trust). A PCT, by the way, that shares a border with ours but, hey, there are no prizes for proximity in this particular lottery.

The news that one more deaf child will benefit from bilateral implantation is an event to be celebrated but we would have to be supremely altruistic not to feel a pang of frustration at the astounding randomness of it. The weight of evidence is not greater in Derbyshire than it is here and I'm pretty certain their case didn't differ too much from ours. How can I be certain? Because we spoke at great length in the days leading up to the hearing and shared everything we had used ourselves with them.

Wait, it gets better.

A family in the South of England got a bilateral implant for their daughter on appeal in autumn last year. Their PCT were persuaded by an excellent letter written by the mum, accompanied as it was by useful references and web links. The letter was reprinted in the CICS newsletter, hopefully so that it can be sent to the ever-dwindling number of recalcitrant (and/or broke) PCTs who still claim there is insufficient evidence.

I bring your attention to this one because the article that accompanied it contained lines such as this:

I've always thought that families who have a deaf child are a part of a bigger spiritual family. Jason, Nicky and Tom Broekhuizen are living proof of this belief, as if it wasn't for that late night phone call and all their insight I'm sure that the outcome for funding would have been different.

This is not an attempt to 'big' us up; any insight we have is simple research and the painful experience of going through the process. We families are all in the same boat and we will happily talk to anyone about our experiences. Its not even as if we're charmed in any way either ('natter to me and all your implant wishes will come true') as other families will testify. The point is, of course, that as close to the same case as makes no odds has been made to several PCTs with profoundly differing outcomes. This is not a stunning revelation but that doesn't mean that it is any less galling or any less absurd.

I have tried to understand healthcare legislation once or twice and it bored me to tears (you'd think it was done that way deliberately). I am sure, somewhere 'in the beginning', that there were some semi-solid reasons for allowing different PCTs to decide for themselves which services their citizens could have access to but didn't anyone foresee this sort of situation?

There's something basic about wanting to be treated fairly - some of my clearest of memories of school teaching are of kids protesting vehemently about perceived unfairness - and it is that injustice which keeps us fuming. If no-one in the country had access to bilateral implants it would undoubtedly be easier to accept. Undoubtedly we would be lobbying like crazy for parity with the US or most of Europe but it wouldn't be quite as 'in your face'.

I'm at a loss. What next then? Any ideas?

Bilaterals in the News

Bilateral implants have made the national news this weekend courtesy of this article in the Guardian.

The parents of a six-year-old girl who was born profoundly deaf are complaining to the Office of Fair Trading after the NHS refused to provide her with a second "bionic ear" implant, leaving them with a £30,000 bill for the operation.

Six-year-old Sarosha Byrne from Nottinghamshire will today undergo an operation to receive the cochlear implant to fully repair her hearing. But her primary care trust has refused to foot the bill in what her parents say is a postcode lottery affecting more than 3,000 children.

The case is now the subject of an OFT inquiry after her parents complained that Cochlear, the multinational company which makes the implants, is charging £5,000 more for the device in the UK than it does in other countries.

The cochlear implant costs £12,563 in the UK compared with £7,770 in Sweden. Parents here also have to pay £19,000 for the operation to insert it.

I’ve talked at length to Sarosha’s father Dominic on numerous occasions - that is the way of it when you join elite clubs such as ours. The circumstances of our children’s deafness and treatment have differences; Sarosha was born deaf and had her first implant four years ago whereas Tom lost his only a year ago and was implanted shortly after, but the similarities and shared challenges are more numerous. She is a shining example of what progress can be made through appropriate therapy (Auditory Verbal courtesy of those nice people in Bicester), good professional involvement and parental dedication as, we think, is Tom. In addition, many of our battles with the authorities have followed parallel courses.

We started talking soon after Tom was first implanted; the Byrnes’ had been fighting for bilaterals with a different Primary Care Trust (PCT) and we compared notes frequently. Back in August of last year we were even interviewed for the same Times article – a postcode lottery piece that was written as a follow up to this successful appeal but wasn’t published. Now their story is being told but with a few extra frustrating and painful chapters.

Cochlear’s pricing structure is not geared to rip off private patients like the Byrne’s and ourselves. In the UK, Cochlear’s main customer by an overwhelming majority is the NHS – it is them they’re dealing with. Does the health service know about this huge price differential between the UK and elsewhere? Is there an explanation to offer? Are they doing anything about it or just leaving it up to people like Dominic and Shamim?

There is, of course, a double whammy. Sarosha and Tom were turned down for second implants for a smokescreen of reasons around how ‘unproven’ bilateral implantation is. Apparently, there isn’t the proof that hearing out of two ears isn’t better enough than hearing out of one (except when it’s treatable by relatively inexpensive hearing aids). Excuse me for sounding facetious – I just need to shorthand my way to the point. The reality was budgetary; the amount the (NHS) Implant Team charges the (NHS) PCT for a second implant isn’t much less than they charge for the first (in the region of £30,000 for the first year) partly, one must presume, because of the cost of the device. So the inflated cost contributed to the initial refusal and then has to actually be found because you're the dedicated family who reads the evidence and knows what counts and what's at stake.

We didn't choose Advanced Bionics because of the price - when the device is given via the NHS, as the first was, the decision is made based on everything but. As it turns out we chose a company who made it considerably easier to afford the second implant than Cochlear but we'll still be cheering on the Byrnes' in their fight. The manufacturers have a role to play in the drive towards increased access to bilateral implantation. Their costs feed into the dreaded QALY equation and could well tip the balance.

Of course, the NHS has an even bigger part to play with its internal market and inefficiencies but that's for another day.

Rant over.

Tom media watch

For those of you who get a kick out of seeing Tom mentioned around the web - or maybe that's just me - the local paper - The Nottingham Evening Post - namechecked him in this follow-up article to the Guardian piece (hope the link survives - they can be a little flaky).

In a slightly more exclusive publication, The Ear Foundation's Spring Newsletter, Tom has made the front page. Admittedly, it's the back of his head but they did take lots of photos of him and Nicky which are featuring in their Steps Together resource material. That shouldn't be the only reason you decide to purchase this incredibly useful pack, fabulous though the pictures are.

Tom's Year

On Sunday it will be a year since Tom was admitted to hospital suffering from pneumococcal meningitis. Although incomparable with that time, this past few weeks has been, understandably, tough for us.

This video is our attempt to show what astonishing progress Tom has made since then. He is walking so well now, tackling steps without help and running everywhere in the way toddlers do. If you see this video through to the end (apologies, it runs to seven minutes or so) you'll see how much he's talking too.

He is our inspiration - nothing will stop this boy.






Tom's Year on Vimeo

Just like PC Plod!

‘Motorcycle man!’ Tom declared, staring at the object of his suspicions.

‘Racing car man?’ he further enquired, uncertain now as the Motorcycle Man had not responded as expected.

The target of this curiosity continued to stare straight ahead, impassive behind sunglasses. Tom’s assessment was not far off and my slightly hushed assurance that he was probably right didn’t quell his curiosity. He needed to hear it from the horse’s mouth.

He decided to press and the burly, potentially toddler-eating Hell’s Angel continued to ignore him. Quite sensibly, given that the said gentleman was on a Derby-Nottingham train rather than a Harley, a review of the evidence was required.

‘Motorcycle man!’

‘Sunglasses on, motorcycle jacket’

‘Man’s got long hair. Man’s got a beard! Man’s got a nose!’

It was the last one that broke the alleged biker’s stony resistance. His ‘chick’ started giggling at ‘long hair’ – he held out until his (pierced) nose was listed and a smirk broke briefly across his face before ‘cool’ was restored. Satisfied, Tom turned his attention elsewhere.

‘Just like PC Plod!’ he shouted down the corridor at a group of police officers and, after correctly identifying one as a police woman, began to berate one of them.

‘Policeman put your helmet on!’

I glanced over at the biker; he seemed relieved that he’d got off so lightly. The young policeman was busy trying to explain to my toddler son (who has a thing for appropriate attire) that he couldn’t get through the train door with his helmet on. This didn’t wash; he wisely gave in and donned his helmet.

God grant me the serenity...

The anniversary of Tom’s meningitis is approaching and hilariously ordinary days like these keep happening. Unfortunately, what also keeps happening are the recurring memories and the late evening conversations where positive comparisons of then and now (then being PICU and the immediate aftermath) give way to fears for the future and a nagging inability to put the good advice into practise by having that serenity to accept the things we cannot change. We’ve got the next bit sorted; nothing is more important to us than, courageously or not, changing the things we can -Tom’s progress is testament to that. Sadly for us, though we also know the difference it doesn’t always help.

It was never going to be an easy month, this one.

Easter - the aftermath

The washing machine is grinding to a halt after its fourth run of the day; the toy Dyson lies where it was abandoned on the rug; a rapidly deflating McDonalds balloon bumps limply across the floor at the slightest breeze and Tom, not before time, sleeps soundly in 'the racing car bed'. The house is quiet and the Easter Holiday weekend is at an end. The tornado that is the Family Smith has passed on and we can rest again.

I make it sound more dramatic than it was; these old university friends of mine and their three delightful children were no different to any family of five wired on a heady cocktail of Fanta and their youngest's body weight in chocolate. And Tom adored them. He followed the older ones round, he directed questions to them and understood what they said back. Tom laughed with Ellis and Rhianna and, as part of a joint project with the latter that will be worth a couple of credits in delinquent school, coated much of the shed in chalk. He chased and was pursued; he tickled and guffawed and generally had a ball.

And so did we.

The weekend was exceptional merely in its ordinariness, the sort of weekend families have together, and it couldn't have come at a better time for us. So, in the style of all the therapy sessions we subject Tom and ourselves to, here are our 'take home messages' from the weekend.

1. The house of the Golden Arches is a perfectly acceptable, nay ideal, restaurant of choice for an Easter Sunday lunch with four under-10s.
2. An hour-and-a-half long bedtime tantrum is par for the course and not, as nagging voices in the backs of minds will have it, in any way exacerbated by Tom's deafness. It's exacerbated by chocolate.
3. Staying off the topic of work isn't always the best course of action on holiday weekends, particularly not when one of said friends is an Occupational Therapist who, in a few short minutes, came up with some excellent suggestions for helping Tom with his still-slightly-suspect balance. Tom was discharged with unseemly haste from the out-patient physiotherapy and while I don't doubt there are far more needy cases in their long, long waiting list, this experience sits in the 'not good' half of our NHS experiences pros and cons list.
   

So there you go Smiths - there's your mention. You are deserving of so much more though - this weekend has been a much needed shot in the arm for us all. Thanks.

Easy like Sunday Morning...

Here's a little movie Tom and I made the Sunday before last. I'd like to pretend that it's the kind of things we get up to every weekend. It makes me out to be quite the dynamic, funtime dad. Participatory food preparation in the kitchen followed by amusing games.... it's all educational play in our house.

Yeah right.

The closest we get to fancy kitchen action most Sunday mornings is slumping in front of 'Big Cook Little Cook' re-runs. I don't know what got into us that day - a combination of good sleep and those poppy seeds we were chomping on. Rest assured, normal service has since been resumed.

If any of Tom's speech therapists watch this; I really didn't help him out too well with the questioning about the breadmaking did I? Sorry Katherine, Jacqueline and Tanya. I will do better next time.






Sunday Morning Movie on Vimeo

The decision that never was

I was early to my desk yesterday morning, fingers hovering over the keyboard ready to pound out a fuming diatribe about the Healthcare Commission, PCTs and all the usual Dark Forces that are lined up against us. I made a few false starts... a few sentences about a phone call that told me little that I hadn't already suspected... but I kept deleting them. I just wasn't angry enough. I'd prepared myself too well for the expected disappointment.

As it was the phone call didn't even bring the anticipated rejection; it was actually to tell us that the review proper was just about to start and that what was being examined was the process rather than the decision - which I kinda knew. That the process involved flawed thinking, erroneous interpretation of data, ignorance of the facts and dismissal of expert opinion is, I would hope, where there is thin glimmer of hope. I suspect, however, that the PCT are going to get marks for effort - they did try to think, after all... and they collected some data and expert opinion which, although the interpretation flew in the face of national trends, accumulating evidence (check out PubMed folks) and said opinion was still, erm, done.

So I didn't get round to this post yesterday. Just as I was building up a head of steam a sleepy smiling face appeared in a bedroom doorway and I got distracted. A few cuddles cheered me up, as did Tom's running commentary that flowed uninterrupted through getting dressed, washed and out of the house.

It still sucks that our PCT is broke. It still sucks that we have to be among the few pioneers who discover all the bizarre quirks that accompany life as a part-NHS, part privately funded implant family. What doesn't suck at all is the jabbering fruit loop that is Tom.

At a slight tangent - but this is where my thoughts led so let's go with it - the whole jabbering offspring thing made me think of Schuyler and her Monster. Rob relays his morning's TV viewing when he heard a mother complaining about a child reading and talking too much... you can't make it up. Perspective is an interesting thing - particularly when kids are involved.

Waiting Again.

Early next week, after 7+ months of (presumably) gradual ascent in someone's in-tray, we should hear the outcome of the Healthcare Commission's Independent Review. I have touched on their place in the grand scheme of things a couple of times at least (I wasn't so hot on the labels in the early days). They're frequently described in the press as the 'Health Service Watchdog' which isn't a bad description but, considering the size of the Health Service, I wish they had more than one dog to watch it.

So we had to complain about our treatment, or lack of it, by the local PCT. We compiled what I'm tempted to call a dossier about the PCT's exchanges with us, particularly the appeal panel session itself and the increasingly isolated position of our PCT with regard to bilateral implantation and meningitis.

I don't know how this will end. In retrospect, it seems to me that we took something of a scattergun approach to the complaint, including as many possible angles in the hope that one of them was the required trigger. Like I've said before, these dealings with bureaucracy feel like a particularly cruel children's guessing game. There is a right answer, they're just not going to tell you the question and will, if the mood takes them, change the answer if you get too close with your guesses.

I'm not sure what range of actions are open to the Healthcare Commission. We give short shrift to the dream scenario, where an outraged 'Commissioner' demands the PCT apologise and reimburse us for Tom's second implant forthwith. Instead we kid ourselves that it's a done deal and the outcome will be along the lines of 'while it is unfortunate, the PCT were within their rights to...'. And so we prepare for the next step.

'Here you go'

I thought I'd record a couple of language anecdotes before I forget them. They're not poignant or immensely significant - they're just typical of where Tom is at.

Curled up in Tom's 'Racing Car Bed!' (it is always pronounced with an exclamation mark) this evening, Tom and I read perennial favourite 'The Three Little Pigs'. The first pig had just met the little girl and, spotting him for the mug he was, she'd sold him a load of straw. I read the next line -

''I will make a house of straw' said the first little pig'

and Tom dived in with the next ...

'So he did just that!'

Hardly remarkable I know. Tom is so familiar with the story - I do the whole pausing for him to finish the line thing and getting him to describe the pictures so he can pretty much tell it himself. What struck me though was that this was just a throw away line that I've never emphasised - it just links the interesting bits together but Tom has absorbed it without being 'taught' and knows its right place.

This morning Tom was sat on the bottom step and I was putting his shoes on him (pretty much the only piece of clothing he will deign to let a grown up put on him without a fight) and Tom went into a little monologue as is his wont -

'Lady put the shoes on Tom'
'Lady said 'Here you go Tom''
'Daddy said 'Thank you lady''

And so Tom recited his account of the purchase of his latest pair of shoes - an event that took place weeks ago. This made me chuckle for all the reasons it does any parent: he picks the oddest things to remember and natter on about, he uses a phrase that we must use a lot ('Here you go') and applies it to a memory in an appropriate way but where it wasn't used originally,

...and he's learnt some manners somewhere along the line too.

Baby's first...

Tom has abruptly entered a period of determined self-sufficiency - but on his terms.

For example - all stages of the toast-making process are preceded and punctuated by a forceful 'Tom-tom do it!' or 'You do it!' (he means 'I' - he has a very individualistic understanding of personal pronouns and uses them liberally and in defiance of common conventions) but when it comes to actually sitting and eating the stuff, the only way its going to be finished before Christmas is if its offered up to his busily chattering mouth.

Getting dressed is another area where Tom is making a bid for autonomy. Its very cute watching him get in a tangle of vest, pyjamas and processor harness - unless its one of those rare occasions when work-at-home dad has to catch a train to the big smoke. He knows... of course he knows.

So yesterday morning, during the daily dress-a-thon, Tom achieved a first which the baby book seems to have missed out of its list of dates to be celebrated - he reattached his magnetic headpiece.

'Tom-tom put your ear on!'

It makes sense to us.

Seminar Postscript

I wasn't the only parent speaking at the Ear Foundation on Tuesday and, on re-reading my last entry, I feel its important to give them a mention as they, like us, never gave up even when those who support bilateral implantation were saying it was too late.

Tricia Kemp, southern coordinator of CICS spoke passionately and incredibly eloquently about her son who, born deaf, didn't receive his second implant until he was 18 and is benefitting. Aside from the bilateral dimension, Tricia's son's story is particularly thought-provoking. They sought an implant when they weren't offered in the UK and had to travel to Germany in 1991 amid incredibly negative reactions from professionals. We have made some progress in this field then...

Another Mum, Annie Wilson, had brought along a video of her 11 year old explaining for himself how his second implant, carried out only a year or two ago, is helping him. It was very touching and unfortunate that the conference as a whole didn't get to see it. Maybe she'll post it on Vimeo (the thinking person's smut-free alternative to Youtube)?

Tom's story is short and relatively painless compared to some. We never use the word 'lucky' to describe our situation - but on the big scale of unfortunate-stuff-that-happens-too-often, maybe we did OK.

Notes from a Seminar

The Ear Foundation held a major seminar on Tuesday (6th March) - 'Bilateral Implantation: Two implants - always better than one?'. The agenda was littered with speakers who are big names in the field of cochlear implantation and audiological research, not just in the UK but across Europe and America. Somewhere down near the bottom of that list, representing a parent's take on all things bilateral, was me. Seeing as we live a stone's throw from the Ear Foundation and Tom is one of the few bilaterally implanted kids in the country (apparently there were around 50 this time last year so it's safe to say there's still well under 100) such opportunities are bound to crop up.

It was a fascinating day; if you ever get the chance, and have an interest in the scientific dimensions of cochlear implantation, then listen out for Rich Tyler (here's a recent lecture), Gerry O'Donoghue (another lecture) and Paul Govaerts to name but a few.

I didn't, however, spend the whole day with my jaw hanging at the sheer cleverness of this cochlear implant stuff. I've moved on from that; after all, Tom is living proof that it is a phenomenal technology that can change lives. We've been waiting for the literature to catch up. More important were several inter-related issues that surfaced during the course of the day... things that place our recent history into stark perspective.

Whichever way you look at it, there is now more than enough evidence of the published, quantifying scientific kind that bilateral cochlear implants work and add considerable benefit to those who aren't assisted by hearing aid. Some of it, admittedly, has emerged since the request for bilaterals for Tom was turned down back in June 2006 but, largely speaking the professionals have known for plenty long enough. There is also a mountain of anecdotal evidence that describes how binaural hearing (hearing in both ears whether it be a mixture of hearing aid and implant or just implants) enriches people's lives by placing them back into the world of sound in a way that unilateral hearing can't match and that is very difficult to quantify.

Essentially, you will struggle to find anyone working in the field who doesn't feel that bilateral implantation, particularly for young children with their years of language development ahead of them, would enhance the quality of recipient's lives in a deeply profound way. One of the key messages from the conference is that's a given and the earlier the better.

So, as there doesn't seem to be much dispute about the value of bilateral implantation, discussions touched on the thorny realities of public sector funding and the ongoing NICE appraisal. It was at these junctures that things got heated, and rightly so.

The position that has been taken by funding bodies in this country - using the lack of research evidence (of which there isn't really a lack) as a convenient scapegoat for not providing for bilateral implantation - is increasingly untenable. It has always been a disgraceful head-in-sand position anyway; it doesn't take a medical genius to see that cost is the only deciding factor. To pretend otherwise is deceitful and one of a number of ways of infuriating the average parent. Never was it suggested that Tom only wear one hearing aid during the period before implantation and, as Mark Lutman mentioned during yesterday's conference, there is little scientific evidence to back up the provision of two hearing aids as opposed to one. So why were we furnished with two? Because gut feeling tells everyone that aiding both sides is best of course.

The seminar reached its emotional peak when the vice-chair of the British Cochlear Implant Group (BCIG) fielded questions on her presentation; essentially a report of the findings of last year's survey of bilateral provision across this country's 22 cochlear implant programmes. What her results suggested was that there were huge discrepancies in not only bilateral provision across the country but also between implant programme's attitudes. There were few statistics presented; we mainly saw examples of the answers given by the respondents. While it isn't surprising that there are differences of opinion and approach across the country, what alarmed was the tone, particularly when it came to funding.

At Tom's appeal one of the panel asked me a question along the following lines - 'If you had two deaf children and two implants, as their parent how would you choose to share them out?'. This guilt-laying approach, possibly designed to appeal to my liberal social conscience, completely misses the point in terms of how the medical profession should be addressing this issue but is indicative of the way the Health Service works itself. The Implant Programmes are presented with the same choices by funders; for every bilateral someone else misses out on one. Keep asking and we'll take the funding away altogether.

The BCIG vice-chair concluded by outlining the recommendations they were proposing to make to NICE. Their policy statement proposed a list of who should get bilateral implants:

• patients following meningitis/ossification
• in case of additional sensory handicap
• where there is a loss in performance or device function in the first ear
• for participation in research studies.

Essentially the BCIG were preparing to take an incredibly conservative line when the research and the conference was screaming for something much more far-reaching. With the window of opportunity for language development so small, more and more research is indicating that the greatest benefit is gained from both auditory nerves being stimulated at as young an age as possible. All deaf children who gain no benefit from hearing aids should be offered bilateral implants. The longer there is procrastination the more children will miss out.

The contrast with practice in many other countries is stark. A surgeon from Sweden spoke about how bilateral implantation for profoundly deaf children is standard. It took a fight, by parents and the Implant Centres, but they were prepared to fight. With the group who represent the Implant Programmes only offering watered down recommendations, it would seem that we're not up for that sort of fight in the UK. Why?

Is it something to do with how we think about children in this country?

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?