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.

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?

'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?

Snowtime

We just got back from the Alps and, as you can see, Tom fills out a snowsuit quite nicely, the belt gives him a most peculiar hourglass shape, accenuating his nappy-clad butt quite spectacularly.
Surrounded by indulgent family, the boy had a marvellous time. Too marvellous a time on occasions which led to a couple of spectacular tantrums, the most dramatic of which led to this:
An hour or so of screaming after a trip in a telecabine ('flying train' in Tom parlance) and a spot of light sledging takes it out of a boy. Thank goodness for underfloor heating.

Everyday thoughts

Last night Tom threw an almighty tantrum. It’s hardly surprising, he is two after all, but they are fairly rare and, in our sensitised parental state, we tend to pick over the aetiology of the tantrum, catalogue its cause and symptoms and then do our damnedest to avoid it happening again.

Because tantrums suck.

This one was my fault although, in the no-blame culture that pervades our house (really? OK, no overtly allocated blame then), there were many contributing factors that could be identified. Tom was exhausted when he got home from the childminder, whose daughter had plied him with chocolate just before he left, and, consequently, he was a greater pain in the butt at dinner time than he normally is. I love this pain in the butt, you understand, but his utter disinterest in meals until the ice cream comes out drives us to distraction.

So far, so toddler. So far, so normal family. The boy’s pooped (he’s decided that he’s not napping during the day any more), has just got home and wants nothing more than an opportunity to play in ‘Tom’s house’ while his parents, a little strung out from their respective working days, want to undo the dietary damage done by other people feeding our precious firstborn and assuage some standard, two working parents guilt. We get through it without redecorating the floor.

So we move on to bath time and everything starts to unravel; the tantrum kicks in, the snot starts to flow and… we have our most stark daily reminder of Tom’s deafness. What is a straightforward refusal to remove an item of clothing becomes infinitely more difficult to deal with, for me at least, when the item in question is his implant processor harness and the accompanying coils that enable him to hear. Refusal to remove a shirt is just a two year old who has lost his ability to understand; refusal to remove his hearing is something far more profound, whether it’s a mere extension of the stubbornness or not.

Last night this was compounded by Nik’s discovery that Tom’s right implant wasn’t working and, presumably, hadn’t been for some portion of the day. We know he can hear with his left implant, it was tested only last week, but listening with only one ear is incredibly tiring. The extra concentration required is enormous and must have contributed significantly to Tom’s fatigue and mood.

The battery in the right processor was flat – a development we hadn’t yet encountered. I instantly knew why; I had left the processor on the test setting overnight and, although I’d noticed in the morning, I had been in a rush to get Tom dressed and out of the house and had treated it with a laissez faire, ‘it’ll all be OK’ attitude that I would to dressing Tom in yesterday’s vest or forgetting his gloves.

I thought that attitude had gone when Tom had contracted meningitis… and certainly would never be applied to anything related to his hearing. Yesterday evening when all the crying was over and the boy slept, and now again when I write this, I was drawn back to the painful days when Tom was ill and I was reassuring myself and Nik that it was just another childhood bug, that all he needed was Calpol and an early night. And that is a place I don’t like to go but this stuff is all still so close to the surface. My coping mechanisms are good, most of the time but, given an opportunity to introspect, I leap at it.

Take this, seemingly innocent example. Checking on Tom when he’s asleep is one of the evening’s little luxuries that Nik and I share. Then one day she asked me:

‘Do you like this so much because he hasn’t got his processors or glasses on?’

How about that for loaded? Our angel, just as he was before all this happened, not how he’s going to look day in, day out for the rest of his life. How are we going to help his self-esteem if, deep down, we still linger over the gadget-free pre-meningitic version? It seems that every way we turn; every preference we show is entrenched with hidden meaning.

So – getting back to where I came in - avoiding this sort of tantrum and this sort of journey into the recent dark past is based on good battery management. Remember that.

Releasing the pressure valve

So I've wandered a little further out into the blogosphere (I'm glad I don't have to say that out loud - I would have to castigate myself mercilessly) following hyperlinks hither and thither. As one might imagine, I've been drawn to experiences not entirely dissimilar to mine. On the other hand, maybe you wouldn't imagine such a thing - I've questioned the sense of it on numerous occasions when the empathetic tears start to fall and my shoulders start to involuntarily shrug along with the sobs. They don't last long, by the way, these involuntary outbursts of emotion. Maybe, in fact, I've subconciously stumbled upon a coping mechanism:

Poignant Blog => Outburst of pent up emotion pertaining to our situation => Feel better and can be strong, paternal type again.

Anyway, the blogs you MUST read:

The Wait and the Wonder - Moreena writes humorously and poignantly about her family's life, particularly the impact of her six year old daughter's congenital liver condition which has led, so far, to two transplants. I've been trying to put my finger on whyMoreena's blog spoke to me; clearly there are obvious parallels - we both have first hand experience of sitting next to comatose offspring and have gained narrowly specialised medical knowledge that would stand us in good stead on Mastermind - but the thing that bit was her depiction and musings on the normal life we strive to lead when the emergencies are behind us, the anxieties have been suppressed and 'everyday' squeezes back in.

The other is My Beloved Monster & Me - the blog of Robert Rummel-Hudson who writes, mostly, about his daughter Schuyler, the Beloved Monster of the story, who has Congenital Bilateral Perisylvian Syndrome (CBPS) , his own dealings with 'the Beedies' (diabetes) and how the two of them, along with Mum occasionally, rub along and face down the challenges. He's blunt in a way that people who've been sledgehammered with a diagnosis like CBPS are allowed to be and he's wickedly funny with it.

Once you've walked in Moreena and Rob's shoes a while, I suspect you may see the world a little differently.

Audiology Update

The 4th January saw Tom's 8 week tuning session for his left (sometimes referred to as 'new' or 'our') implant. Attempts to encourage him into a game whereby he put a brick on a tower every time he heard a sound didn't quite work as intended with Tom intent on adding as many bricks as possible before the urge to destroy overwhelmed him.

An even greater challenge for the audiologists (Sue and Tracey - we've had to change because of our odd publicly/privately funded state) was identifying a quiet period long enough to play a sound in and judge Tom's response. He was far too busy demanding cars from Tracey and explaining their movements to spend any time paying attention. He's two you see.

My assumption that the session was something of a washout was dispelled by the team who were more than satisfied with Tom's progress. He's hearing at below 40db across the frequency range which, if my interpretation of such things is correct, is the equivalent of a mild/moderate hearing loss. Given that his right ear has been implanted and switched on slightly longer, and definitely his 'good ear' still, I would have to declare myself supremely satisfied with progress thus far.

Equally pleasing in many ways was Tom's behaviour during the testing. He is now comfortable enought to let his inquisitive nature come to the fore. Rather than cling to me, Tom wandered off into the 'control booth' to check on Tracey's progress with his processor - we had persuaded him that she had to borrow it so she could 'fix it' - and ascertain the whereabouts of the Postman Pat van Tracey had claimed was 'lost' (he found it - he has a gift that way). He also let Tracey replace his coil when it detached - a major step foward in the 'personal space' stakes.

Nik had read somewhere that it took at least six months to get over meningitis. It seems that may be the case - he's growing more confident, happier around new people and darned cheeky with it. He's currently experimenting with how far a charming grin will get him and it has become his first line of defence when challenged on naughty behaviour. We're getting very good at stifling our own giggles.

Celebrating Holidays and the Art of Walking

It's over seven months now since Tom was discharged from hospital. He didn't regain the ability to walk for another month or so.


A couple of days after Christmas we took a walk to see Threave Castle. Tom walked well over a mile on slippery leaves, collected sticks and bounced on the odd farmer's fence. Admittedly, much of the return journey to the car was incentivised by the promise of jelly babies but he was up for the challenge.

He also developed a worryingly defiant urge to grab barbed wire fences which we must nip in the bud.

On New Year's Day at our local park. He climbs short ladders, he goes down slides, he loves his mum... he's a happy, active two year old.

Is this really the best way to run a health service?

I have been striving to achieve a zen-like state since Christmas. I have has lots of sleep - Tom has developed a penchant for lying in until after eight o'clock - and feel like I can face the world with a degree of calm and a level of rational thought that tended to escape me in 2006.

Then I watched a report about this on the BBC this morning, described on their website thus:
'Controversy over child referrals'

GP's here have been sent a letter detailing the cost of referring children to the local hospital.

It asks whether any of this could be done more cost effectively.

The letter says the trust spent £1.5 million referring children to the local hospital last year

It points out that 79% were discharged within a day and goes on to say "this area of activity was one which was likely to achieve cost savings"

It doesn't take much of a leap of imagination to take the same view as GP Eric Rose, quoted in the article as saying:

"I think if you're fairly new to the job, you're impressionable, you're given the impression that you're referring unreasonably - you might think again."

"I think it's potentially dangerous. It would only take one child that should go to hospital not to be sent to hospital and for there to be a tragedy and I think there would be a lot of questions asked."

I wonder if something similar had been received by our GP. We took Tom to him the day before he was admitted to hospital with pneumococcal meningitis.

We were sent home.

Depending on your measure of a tragedy we either narrowly escaped one (our boy is still here) or fell victim (he remains profoundly deaf) in a manner not unlike that described by Dr. Rose.

A measure of balance (one that drives my wife a little bit mad) reminds me that meningitis, along with many childhood illnesses, is notoriously difficult to diagnose - there are enough desperate stories of children dying after misdiagnosis in paediatric A & E departments to illustrate that - but does putting pressure on GPs to think financially as well as medically when making such decisions really make sense... to anyone?