More on the Today Programme

In response to a number of complaints from parents and professionals regarding this interview last Tuesday (24th July), Friday's Today Programme on Radio 4 interviewed Dr. Kaukab Rajput from Great Ormond Street. You can listen again (until 3rd August) to the relevant section at:

Listen again - Friday

There is a transcript available at:

I Look so I Can Hear - Cochlear implants in Children

I don't think the interview goes anywhere near far enough to undo the impressions left by the first piece. There are numerous factual inaccuracies in the original piece that weren't addressed and, by dwelling on risks associated with surgery rather than the potential outcomes, Dr. Rajput doesn't go far enough and doesn't sound particularly convinced herself.

So, as an attempt to provide some balance, here is a section of the transcript from the original interview with Paula Garfield of Deafinitely Theatre interspersed with my comments in italics.

“Well, adults and young people who make the decision for themselves is
absolutely fine by me when they are able to make their own choices.

This is a point that Dr. Rajput starts to make but needs much more emphasis. If it was left until the point children could make the decision then the chances of success are greatly reduced. In infants and young children the brain is growing and developing. It is much more able to adapt to new inputs, as from an implant, and make sense of them. The point is, that by having our children implanted, we are giving them choices not taking them away. We do not deny their deafness but to deny them the opportunity to hear?

But, what I am not comfortable with is babies who are implanted as early as possible because deafness is not a life threatening illness and a Cochlea Implant placed in the
head of a baby has many, many risks

the surgery normally takes around two hours and almost always under three (not the seven stated elsewhere in the interview). The risks associated with it are those related to general anaesthesia and precious little else. There is some suggestion of an increased risk of meningitis which is addressed via a vaccination prior to surgery. There is also a very low risk of contact with a facial nerve - something that any surgeon knows about and knows how to steer round.

After both his implants Tom stayed in for one night. In the US it is now routine to send implantees home the same day.

and the Cochlea Implant is then there for life. The child doesn’t have the choice of taking it off when they have had enough,

the internal part can be explanted if there are problems but there are precious few who need or choose that option. Any implanted person can, however, take the external device off whenever they want. Indeed, I watched an implanted girl and her mother give an incredible presentation a few weeks ago. As soon as the girl had finished doing her piece she sat at the back and flicked her coils off so she could concentrate on her book without having to listen to her mum embarrass her with stories of her younger days.

when they experience tinnitus maybe as a result of it. It’s stuck there.”

The RNID, in this factsheet, point out that most people experience a reduction in tinnitus post implant

This blog is hardly Radio 4 in terms of its audience but every opportunity to point out such inaccuracies like this must surely be taken.

A Day at the Office

Tom seized the opportunity the other day and took control of my office. I work from home most of the week and Tom occasionally pops upstairs to consult with me on important matters such as 'which is the best website to watch Lightning McQueen' on and 'which is the best photo of Tom'.

So this video seems to reflect what Tom thinks I do all day. He also always thinks it's grandpa on the phone.



A day at the office from Jason B and Vimeo.

Radio shows that should know better...

I was a bit late in the day getting to this. Obviously I aways listen to the Today programme on Radio 4 but yesterday, what with being Daddy Daycare and all, I had to forego...

Anyway, wouldn't you know it, yesterday's (Tuesday 24th July) show featured an item on cochlear implants. You can hear it until Sunday on http://www.bbc.co.uk/radio/aod/radio4_aod.shtml?radio4/today_mon - the item is about 2 1/4 hours in (around 8.19) - the controls allow you to jump in 15 minute increments.

A play, expressively titled 'Playing God', was being discussed. The playwrite, a deaf woman who's comments were being translated, had a position on implants for children that you mightn't have too much difficulty gathering from the play's title. I'm one of the folk 'playing god' with my child's hearing.

Also interviewed was Emma Nicholson, a Liberal Democrat MP who is partially deaf herself. She weighed in with some heartily ill-informed comments too, largely based around concern about the young age of some implantees.

I have no problem with people having opinions different from mine it's just that, too often with cochlear implants, they are couched in language that brooks no alternative and it was these opinions that were broadcast on a national radio show that is largely regarded as setting the day's news and political agenda with no airtime given to the counter-argument. And when I say counter-argument I mean scientifically proven benefit and factual accuracy.

There are so many untruths and leading opinions in the piece that could leave those who have no understanding of cochlear implants feeling that surgeons in this country were inflicting terrible pain on children for no reason. The desire to give a child the opportunity to develop spoken language and operate in the hearing world (which the vast majority of their parents occupy) is presented as a fool's errand and detrimental to the child's wellbeing.

Those of us 'on the inside' of the cochlear implant world thought that the climate had changed. For us the battle lines are drawn on issues of number of implants (two for all children at least please) not on whether parents should be able to make the decision on their child's behalf. The item actually suggests that the decision should be left until the child is able to contribute to the decision - a stage when the benefits are greatly reduced because of a lack of auditory stimulation to the brain in the intervening, developmental years. These are the facts that need to be put before the opinion-formers when they are listening to inaccurate reports such as this.

Just go and listen - and then write to Radio 4 and possibly your MP too.

Rainy days don't have to be dull...

Do you detect more than a hint of 'cheeky monkey' in that face?

Themed raincoat/boots have been something of a feature of Tom's wardrobe this year. Unfortunately he's mixing themes currently so we have a 'dinosaur' coat with 'frog' boots. The 'frog' coat is waiting for slightly longer arms...

Clearly it's a massive sartorial error that we will have to pay for in years to come - possibly with very expensive therapy.

If you could design a weekend...

I'm not with Nik and Tom tonight. Instead I am sitting in a pleasantly contemporary hotel room in the centre of Truro, Cornwall ahead of a fun-filled meeting tomorrow. That's worth an ironic-sounding 'yippee-kye-aye' by anybody's reckoning.

Separations like this happen a little too often but are the unavoidable trade-off against the flexibility of working from home. I get far more 'home' days than 'away' days so I shouldn't complain...

So I sit here and ponder on the weekend that has just gone - a weekend that has seen Tom thrive, amuse and inspire us in a way that has made the weekend seem special but, in reality, happens day after day. A few sweet excerpts from this weekend go a long way towards illustrating how far we've come and just how much promise the future holds.

Saturday Morning

When we're home for the weekend Saturday morning is swimming morning for Tom and me. No longer the hour-long screaming fits in the changing rooms when Tom would refuse to allow me to put an implant on long enough to tell him it would be OK and we were on our way to the shower and yes, he could have raisins soon. Now we splash and giggle and gesture our way through. How Tom might actually learn to swim is a concept I occasionally toy with but tend to leave for the world of 'in its own good time'.

This Saturday, for no discernable reason I could fathom, Tom decided the shallow paddling area with the hand-pumped fish fountains was a perfect place for Daddy and Tom to dine. Intent on his mission and oblivious to the noisy children surrounding us Tom criss-crossed the paddling area fetching imaginary crockery from fantasy cupboards and served me up a delightful banquet of made-up jelly and pretend cereal. We tucked in lustily (occasionally feeding each other tasty morsels) and, while there were occasional friendly disputes over whose invisible plate was whose, it all ended happily. The chores were left undone and we played imaginary drums and pianos, splashing merrily to ourselves. I have no idea what tune Tom heard while he played but I'm sure it was beautiful and note perfect.

We don't sign. The few that were picked up during the short period before Tom's first implant have long since been forgotten. When his processors are off Tom whispers and I either lean in closer, a gesture which Tom takes to mean 'say it again' or I nod enthusiastically and keep on drumming. Simple communication but, for now, it works.

Saturday Afternoon

The annual Ear Foundation barbeque/garden party - an opportunity for an increasingly aware Tom to see lots of other children wearing 'ears' just like his. Only he didn't pay a blind bit of notice , focusing instead on the bouncy castle and hiding under the cake stall table ramming more and more flapjack into his mouth. It makes a father proud.

Nik and I were supposed to be selling strawberries and cream. I was rubbish and kept getting sidetracked into conversation with other parents; parents with similar stories who had that all-important entry level understanding of what this cochlear implant malarkey was all about. Our neighbours popped along too - supportive darlings that they are - and Mark said he couldn't walk more than a couple of yards through the garden without overhearing another conversation that included the abbreviation 'PCT', often preceeded by less-than-polite adjectives.

Once Nik and I had resolved the 'labour discrepancy' issue (I was sorry) I shared all the discussions I'd been party to. There must be few occasions where you can have an objective discussion about who has it worse; those families were children are born deaf or those who have children who lose it to meningitis, without feeling remotely defensive. If you're interested, we didn't resolve that one although the post-meningitic families didn't have quite as many concerns about the surgery - what's a few hours on an operating table compared to a coma?

Sunday

You know your child is growing up when you find yourself able to get to the end of an afternoon with another family and realise you've had chance to actually talk. Tom and his new friend Lloyd needed just the odd poke in the right fun direction and they were happy. The sun shone (for what must be the first time this summer), the (very occasional) beer flowed and Tom was a normal, happy, car obsessed boy chit-chatting away with another car obsessed boy about the games to play next and the best way to get the pushalong car and tricycle wedged between shed and wall.

This was my first experience of seeing Tom with a new friend. By new I mean 'Child who's not Joe next door' - their relationship has morphed into the toddler equivalent of a forty year marriage. They greet each other enthusiastically, talk about each other when they're not there but, as soon as they're together they either bicker or slump companionably in front of the TV. With Lloyd, a seemingly critical few months older, and a little careful parental steerage it was all turn taking, sharing and laughing like drains while expending megaWatts of ice cream- derived kid energy.

Tom so rocks. I must download a picture from the weekend for your delectation. You'll melt at his cuteness.

World of Sound

A new UK site championing cochlear implants has appeared.

World of Sound has started life with a featured campaign, that of the 'postcode lottery' that currently exists with regard to funding. The opening lines say you can:

Read about the funding issues surrounding cochlear implants and the different viewpoints of a parent, PCT and professional.

You might recognise the parent who shared his views. It was written sometime last autumn I think - funny how little has moved forward for us on the Healthcare Commission and funding front since then (when I say funny I mean not remotely humorous and actually an ongoing source of frustration).

The site presents an even-handed approach giving the PCTs and implant programmes the opportunity to explain their positions re: funding which they both manage do without any mention of bilaterals or the vast difference between the process (and likelihood of funding) for adults and that for children. Seeing as these are the requests that are most inconsistently dealt with across the country, for me it seems a gaping omission. Will someone new to the world of implants grasp that from what is presented here?

Because of this it made me wonder who the target audience is. If you are in the process of being assessed for implantation then you are immersed in much more detailed information than you will find here. You will only come into contact with your PCT if you are unlucky enough to have your implant programme's request turned down and then, well your business case might well be incredibly professional (as the representative from a PCT recommends) but if your PCT hasn't got the cash...

In fact, the more I ponder the PCT's position as written here the more I despair and I'm trying not to do that as much these days.

So if it isn't for prospective implantees who is the site for? It gave me another place to tell Tom's story which can't be a bad thing but in terms of moving the debate on around postcode lotteries, I'm not sure it succeeds. For those who aren't up to their necks in all things cochlear there needs to be a little more 'back story' to put the viewpoints given in to some perspective and I would like to see an editorial point of view?

Coming down on one side or the other is not as straightforward as it might seem though (he says, answering his own question). While Cochlear (who sponsor the site) appear to have a position on bilateral implantation (they regard it as the 'standard of care') they remain careful not to upset the people who, usually, have to buy their kit or those who have some influence over which device a recipient chooses.

Overall, any attempt to bring the debate to more people is a good thing and, given the complexity and subjectivity of the topic in hand (and the fact that I got to rant with Tom being a user of the Other Brand), I'm prepared to cut the World of Sound a little slack with their position astride the fence. I wait to see how it develops.

I think I've joined a cult...

There were a few occasions on Saturday where I thought we might have accidentally joined a cult.

There were a number of telltale signs. The most telling is that the system in which we believe, in which we trust, is regarded as unorthodox by the ‘authorities’ and, if we do find support and interest from ‘establishment’ figures then it is spoken about in hushed tones. Despite the opposition we might expect, we were encouraged to evangelise about our belief and the way it had helped us even if we met with resistance and hostility.

There were other, more subtle, indicators that completed the picture for me but I’ve always had an imagination that leans to the fanciful. We met in a large Edwardian house on the outskirts of Oxford (perfect cult territory), everyone smiled continually and, most suspiciously, there was a great deal of communal singing. Even our responses; general elation with occasional lapses into tears, fit the cult theory to a tee.

So what were we up to? We were attending the far-from-sinister Auditory Verbal UK Parents’ Conference, held near the organisation’s premises in Bicester. Of course Auditory Verbal (AV) Therapy isn’t actually a cult but, in the UK, it remains a fringe practise. The AV approach to speech and language development with deaf and hard of hearing children is not outrageous; in fact it strikes us as mostly common sense. So why can’t a well proven approach be considered the norm in the USA and elsewhere not be part of the mainstream here in the UK?

We didn’t even hear about it though ‘official’ channels - it was only via the international CICircle discussion forum and exchanges with other parents that we heard about Jacqueline Stokes and her team. The same goes for the John Tracy Clinic in California – an organisation that promotes verbal communication and run an excellent correspondence course.

Too many of our early interactions with ‘official’ therapists and health professionals have left us feeling deflated at a time where one would hope for optimism and talk of Tom’s potential with these new implants. Realism shouldn’t be excluded but the extent to which expectations are lowered is far from helpful. There is little attempt, bar one notable exception, to challenge us as parents to anything like the extent that Jacqueline does. Is this approach borne out of a fear of failure? A knowledge that the state just can’t guarantee the quality of its practitioners or its provision?

It was only at AV that our role in Tom’s development was really challenged in a vigorous and inspiring way. The way of the state is much gentler and easily missed or dismissed. It seems ridiculous to me now, how ‘British’ their approach is and yet, perversely, how understandable (to a British psyche). Weighing up the best interests and life chances of the child against the fear of causing offence? Sorry, we don’t ‘do’ tough love here. You do what you can and we’ll be here occasionally.

As a parent of a very sick child, or one who has just been diagnosed as deaf, you are very raw. Feelings can be hurt easily but, at the same time, you are desperate to wrestle back some control. After all the tests, diagnoses and interventions there is, at last, something you can do and surely there isn’t a single parent in that situation who wouldn’t want to do everything they could? While there may be moments where you don’t feel you can do any more, that is far from being the prevailing sentiment. We don’t deny that our child is broken but we will do everything in our power to minimise the impact on his future. Sod Holland - we want Italy... and Holland (for those Dutch relatives of mine).

We heard numerous therapist horror stories on Saturday from other parents that left us feeling reasonably lucky in our interactions with professionals. Many could be aggregated under the heading of ‘Don’t get your hopes up’ while others talked of being made to feel grateful for any intervention. I don’t know how prevalent such attitudes are but it should be plain what impact they have on parents and families who have just been confronted with the news that their child is deaf.

As I’ve written before we have been incredibly lucky with our Teacher of the Deaf, Tania Sorenti. She was willing, nay excited, to collaborate with us as parents and our choice to use AV UK. She has undoubtedly contributed to Tom’s enormous progress. I only wish, after hearing other parents on Saturday, that there were a few more of her to go round.

It is so important to say this over and over: cochlear implants are astonishing devices but without appropriate intensive therapy from driven, enthused professionals who believe your child can achieve pretty much anything, then there isn’t much point.

An important piece of history

Stumbled across a link to this article in the Australian Herald Sun over at the Deaf Blog (who I wish would stop that video kicking off on loading the home page).

A short excerpt:

Holly McDonell is living proof of the difference science can make. The 24-year-old has just graduated with first class honours in law but two decades ago she was the world's first Cochlear implant recipient.

As she celebrated the 20-year anniversary of the breakthrough Aussie invention with the surgeon who made it possible, Ms McDonell reflected on the implant that transformed her world.

"Without the implant I am completely deaf but with it I can hear just as well as everyone else," she said.

This is a technology that is unlocking doors in such an astonishing way. This is the sort of story that fuels parental ambition and that Tom will spend his teenage years wishing his dad had never seen.

Nagging doubts put to rest

Cochlear implants and music appreciation is an interesting sub-topic and one that has given us some cause for thought. With so much of pre-school and early school years featuring action songs and the learning of rhymes, we feared Tom's hearing would be a significant barrier to participation. In the paranoid parents' brain I foresaw a dispondent son standing on the edge of a circle while all around him his peers Dingle Dangled their Scarecrows and Wound their Bobbins Up.

Michael Chorost, in his article 'My Bionic Quest for Bolero', addresses the issue in an engaging manner without skirting round the science of it. The limitations of the 'channels' of sound offered by implants makes distinguishing between note close together on the scale impossible. There is promise of more with Advanced Bionic's HiRes 120 Strategy .

We aren't quite at that level of need yet. The 16 channels (well, 15 in the left ear) that Tom is getting seem to be more than sufficent for him to get the tune, the all-important actions, most of the lyrics and a huge smile on his face.

As for the other nagging doubt - to explain it I have to admit, in a slightly guilty middle-class parent way, that Tom likes a bit of TV every once in a while but I've always had the impression that Tom wasn't really understanding much of what he heard. The quality of the sound is different to natural voices and there aren't always visual cues to aid understanding so I assumed it was just the bright colours and rapid movement that was holding his slack-jawed attention.

Watching Tom at AV therapy yesterday allayed this fear and much more besides. I watched most of the session with tears in my eyes; I was so moved by what Tom could do. It was such a simple exercise (as is so much of what we learn with the marvel that is Jacqueline Stokes). Jacqueline played an audio story on an old style mono cassette recorder which Tom and she followed with the book proper, stopping frequently to talk about what was heard and how it related to the story.

Tom was utterly inthralled; attentive, excited and hearing everything. He didn't miss a trick and, when the story was finished he wanted to plough on into the next one. The story held his attention for upwards of 20 or 30 minutes and then, with very little encouragement, he proceeded to recreate the story with toys for another half an hour.

Just to make anyone aware who's joining this story at this point (and remind the rest of you); Tom is deaf, relying on cochlear implants... and he's not quite three years old.

He is loving sound - he's also learning words that we haven't taught him (this is where it starts to get dangerous) and experimenting with the language he's learnt. His progress is such that we've scaled down to once every two months with Jacqueline. There's the transition to school to manage but I'm beginning to suspect that Tom won't be the quiet one on the edge of the circle - he'll be the irrepressible one that the teacher needs to shut up.

'Baa Baa Black Sheep, Daddy Shut Your Eyes!'

I thought kids were supposed to grow up when you weren't looking? We've just had a week or two of wholesome family togetherness on holiday (mostly in the Ardeche region of southern France, thanks for asking) where Tom has been constantly with us; spoilt to within an inch of bratdom and in sight continuously. Scrutinised, in fact - his actions dissected and analysed by a panel of judges. Then we come home and Tom returns to his usual routine a changed boy.

Karen, Tom's childminder, has always described him as 'a watcher'. While the other kids at playgroup charge off and throw themselves into activities Tom would hang back, see what they got up to and then quietly select his moment to act. Often this would involve seizing his favourite pedal car or staying close to the grown ups, whiling away his time in blissful solitude. I've always got that about him. I was that kid once.

This week, though, something has changed. Monday found Tom joining in with the dancing and singing at Tumbletots; something he's studiously avoided in the past. He even deigned to join 'the train' - a conga chain that forms to migrate the tots from one activity to the next. In the past Tom has demonstrated some serious 'personal space' issues at the very suggestion that he may allow another child to hold his hips. On Monday, however, off he toddled.

On Wednesday Karen reported that Tom had launched himself into a softplay area - one of those multi-tiered cage things with slides, giant mangles and holes that were designed to humiliate fathers who aren't as flexible or lithe as they once were. This is another first; up 'til now Nik, Karen or I have been dragged into these squishy, claustrophobic hell-zones where four year olds climb the netting and body slam you in the ball pit. I don't think I'll miss that particular pleasure but I do wonder where these things were when I was a kid (Cue extended wistful reminiscences about the golden age of childhood when you played outside, climbed trees, fell in streams etc. etc.).

A confidence has emerged that has caught us by surprise and we love it.

A year ago today we brought Tom home from hospital. Again. That was the beginning of the journey back to sound - his first cochlear implant. He hadn't started walking again and had been out of hospital less than a month but photos of that time show him smiling, playing and blissfully unaffected by the turmoil that we were going through.

How things move on.

This morning Tom sang 'Twinkle, Twinkle' and 'Baa Baa Black Sheep' to me while I pretended to go to sleep in his bed. He has 'Twinkle, Twinkle' down pat while 'Baa, Baa Black Sheep' sounds like a stuck record. He gets jammed on the first line and needs a small vocal nudge to get him off the first line.

This morning it went:

'Baa Baa Black Sheep,
Daddy Shut Your Eyes!,
Have you any wool?
Baa Baa Black Sheep...'

That's my rather long-winded way of saying 'Sorry for the lack of updates - Tom is in astonishing form'

What Tom did next...

This last few weeks Tom has mostly been...


running around the French countryside while bossing his parents and grandparents around...


Trying to unlock chateaux with his grandpa's car keys. Marks for creative thinking are deserved, I think, along with a sigh of relief that he has moved on from trying the handles of parked cars. That was a slightly disturbing (but criminally amusing) habit.
There was time for looking radiant with his mother and reminding me what a lucky man I am to have a family like this...

We caught nothing bar a few small stones but that kind of effort is tiring y'know?

Holidays are splendid things aren't they?

Of charities and web friends

We received a parcel this morning from an internet friend called Kristin. We share a hobby, nay mild obsession, over at IgoUgo , a travel community website where we contribute travel journals and photos. It's a bit like Trip advisor or the Lonely Planet website (or the many others out there); ordinary travellers write reviews of places they've been. The difference with IgoUgo, to my mind, is that extended 'articles' are encouraged through financial rewards, competitions, annual awards and the like. It's a cool site and you'll find Kristin there as 'stomps' and me as 'jaybroek'.

That was all a very meandering introduction to the real thrust of this post. If you follow the links and read some of the journals then great but more to the point, I've got to know some great people through IgoUgo, many of whom have been very kind and have sent supportive messages over the past year or so. Kristin has gone some distance further than most. Last weekend she took part in the Three Peaks Challenge, raising money for the meningitis trust, a charity that, not so coincidentally, have been a part of our lives during the past year. We have been the beneficiaries of financial and counselling support from the trust; support that has been a vital part of Tom's and our recovery.

Now I'm pretty certain that Kristin was going to tackle the challenge before she read about Tom but it is wonderful to know that she took on the peaks with our son in her thoughts and those of her fellow walkers. Each person on the climbs carried with them a pebble, engraved with the name of a meningitis survivor and Kristin's carried Tom's name. She also took with her a couple of T-shirts; one for Tom and one for herself. It was the shirt for Tom, now signed by all those involved, that arrived in the post this morning and was the cause of a tear or two.

So there's hope for mankind with the likes of Kristin amongst us - people like her keep on doing special things for people like us, regardless of whether she knows us or not.

Thank you Kristin.

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.