A Windy Day

Tom has had some bad gas recently…very much into skunk territory. He is, obviously, pretty proud of this and, being a boy, probably always will be. We have only ourselves to blame of course. His intake of baked beans has been disproportionately high of late and so, as parents, we must shoulder the blame for any minor offence our little stinkbomb has caused.

I extend this apology particularly to the Countess of Wessex who had the pleasure of meeting Tom on Monday. We were invited to be part of a gathering of implantees and their parents at the Ear Foundation when the Countess visited. She is a trustee of the RNID and had expressed a keenness to meet young deaf people – so she got to meet Tom amongst others.

I sincerely hope that she was appropriately stunned by the children she met and loudly broadcasts what is one of the most astounding advances in medical technology of recent years. I have a mild concern that, when sharing her memories with Prince Edward over dinner, she may have had cause to recall the pungently aromatic three year old and his verbally incontinent father but I'm sure the recollection won't spoil their dessert.

As you might have gathered, Tom didn’t show himself in quite his best light. That’s what an hour’s hanging around waiting and inquisitive strangers do to a boy (and a diet rich in pulses). He did attempt to get the Countess' attention by launching his car across the carpet at the Countess’ party handing Nicky a tricky parental dilemma –

‘will scuttling forward on my knees to retrieve said car before the Countess trips over it be construed as over-enthusiastic deference, a security breach that’ll get me pinned to the carpet, or a selfless act to prevent a heavily pregnant royal person taking a tumble’?

Well what would you do?

Luckily one of the entourage came to the rescue and ensured Tom wouldn’t grow up visiting mummy in prison.

Shortly afterwards Tom had his chance to redeem himself when the Countess (I want to call her ‘Soph’ – it’s how we know her at our house) made a beeline for him and initiated a discussion about cars. A smart move under normal circumstances but Tom came over all star struck. He did, reluctantly and monosyllabically, reveal that the blue car was, indeed his favourite but was unwilling to be drawn further.

That was until Soph was long gone and the speeches had started.
‘I want to talk!! I want to talk!!’
‘Don’t shush me!!’ (thank you Madagascar )
And repeat…volume inversely proportional to parental effort to reduce.

We’d run out of ‘incentives to comply’ due to the long wait and, anyway, kind of enjoyed the anti-establishmentarianism of it all. It’s probably tied in with his having long hair – he’s hit his student protest years a little early.

Being an awkward little cuss is what being three is all about of course and besides, when we’ve worked so hard to enable him to speak what on earth are we doing telling him to ‘shush’? And therein lies one of the dilemmas of parenting an implanted child. Social etiquette versus a celebration of the fact that 'yes, our son can talk!'. There's no contest really.

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?

New Friends

Back in June, a few days before Tom received his first implant, Nik visited the Ear Foundation for an open day. Directed at prospective/potential implantees and their families, the day was a tremendous source of information imparted not only by professionals but also those who’ve been through it and went a long way to addressing Nik’s concerns. What it also did - probably the most important benefit in fact - was prove that we weren’t alone.

I don’t have many clear memories of my teenage years; age and a general feeling that I didn’t enjoy the experience very much has led to a suspicion that I watched those years on a bootleg videotape rather than participated in them. One of the few clear memories I have, though, is of having a persistent feeling that I wasn’t really in on the joke. Life was going on, sure, but when I approached, all the participants put their hands in their pockets, started whistling (metaphorically of course) and waited until I’d gone away until continuing with life without me. Why am I bringing up this crushing teenage paranoia? I’m not entirely sure; it might be to do with the fact that I’ve been awake far too long today but I did feel a sense of exclusion again during the early appointments after Tom’s deafness was diagnosed. As a family we were isolated; we were told about this group of people like us but, until we spoke to or met any of them, it didn’t really help.

This is where The Ear Foundation come in (it’s also where CICS, the meningitis trust, NDCS and the CICircle to name a few come in too, bless ‘em all). On that day in June, Nik learnt a great deal about devices, therapies and services but she also met Donna and her son Noah. Noah is a few months younger than Tom… there isn’t much in it…but that isn’t where the similarity ends of course. Noah and Tom also share the misfortune of contracting pneumococcal meningitis at the same time, and losing their hearing as a result. I wouldn’t wish the pain, tears and heartache of what we’ve been through on anyone but to be able to share with people who know exactly what its like without any need to explain… it has made an enormous difference.

Contact with Donna, Richard (her husband) and Noah has continued through emails, phone calls and a brief meeting. Last weekend we met up again at the Ear Foundation’s family weekend in Centerparcs where we sat in a restaurant chatting about our boys and our experiences. Tom and Noah charged around, laughing and just being two years old. We could have talked all evening.

Interesting reading... and a date for your diaries

Over at Lotte Sofie Lotte's dad, who goes by the name of Cloggy, has posted a link to an Advanced Bionics compiled pdf summarising bilateral implant research. A very handy document to take to your appeals...or peruse and marvel at the wonders of modern medicine.

It may also be useful pre-reading for this Twilight lecture due to be given by Professor Quentin Summerfield on 25th January 2007. Hopefully the Ear Foundation will be webcasting it as its subject matter - Challenges to be overcome before cochlear implants can be provided bilaterally in the National Health Service - raised more than a few hairs on my neck.

Not-so-interesting small world facts pertaining to this and putting my interest in context:

• Prof Summerfield has published the only, as far as I can make out, bilateral cost-effectiveness study in this country (a few years ago, based on adults - I banged on about it back in July)
• Prof Summerfield's opinion was sought for Tom's bilateral appeal case. He gave an interestingly ambiguous answer that we felt leaned in favour and justified bilaterals for post-meningitic cases but the PCT decided it leant far enough the other way.
• I was asked to speak at the same conference from the patient/service user perspective. Prior commitments (a mountain covered in snow and lots of vin chaud) prevented it.

I wait with baited breath.

Marjorie Sherman Lecture

I shirked my bathtime duties last night and attended the Marjorie Sherman Memorial Lecture at The Ear Foundation. You look for silver linings where you can and being within 10 minutes drive of the HQ for the only charity dedicated to cochlear implant users in this country is something of a boon. Marvellous people.

The lecture, 'Advances in Cochlear Implantation for Children: from hesitant beginnings to an exciting Future', was delivered by Mark Lutman (short biog.), Professor of Audiology at Southampton University. In cochlear implant terms, 1989 is one of the years; a defining point when ethical questions had to be confronted and the brave decision taken to implant the first paediatric patient in the UK. The lecture took us from that point, through to the current practise that we have benefitted from and on to cover some of the research that makes the future look incredibly promising for Tom and others.

All fascinating and well delivered; I even understood some of it. Bilaterals were touched on; Lutman believes in their value and had some very interesting data that demonstrated the improved sound localisation bilateral implantation brings. The fact that, in Germany and elsewhere, such implantation is the norm was mentioned of course...as was the fact that, in Southampton, requests to PCTs for bilateral funding are almost always accepted. The fact that I smiled ruefully rather than spiralling into a pit of righteous indignation shows just how far I've come don't you think?

The lecture was broadcast live on the web - you will find it alongside the other Ear Foundation webcasts . If you find yourself a free hour, give it a listen. In fact, clear a morning and listen to David Luterman and the Gerry O'Donoghue/Sue Archbold lecture too.

Prof. Mark Lutman's lecture - direct link

But what about Tom?

• He has a Stuart Little addiction that we're trying to manage although he doesn't like the washing machine bit and we need to be quicker on the fast-forward button.
• He's suffering some separation anxiety with going back to the child-minder. It involves alot of snot at the moment.
• He looks particularly professorial in his new glasses; he tends to peer over them as they slide down his nose (a little refitting is in order)

Bilateral Progress, Conferences and Being Two

Tom has been switched on bilaterally for a week and a half now. The left (new) ear is still mapped very conservatively but there are signs.... small signs. His grandfather said that Tom turned straight to him when he came into the room out of his sight line and spoke. Just the sort of response we're hoping for.

We occasionally experiment with speaking to Tom when he's only got his left ear 'on' - Nik noticed some verbal mimicking last night so his brain is starting to work something out. He still demands the right is switched on too, but then, he's always been a big fan of symmetry - wouldn't countenance one hearing aid at all; it always had to be two.

Listening to the Pros

I attended a conference run by the Ear Foundation last week – ‘Parenting in the Cochlear Implant Era’. Got to hand it to the Ear Foundation - they put together an impressive array of speakers that included David Luterman, one of the big names in the field of audiology (worthy of autograph-hunting it would seem… although I should be careful what I say having once asked Jakob Nielsen to sign a poster featuring a cymbal-playing monkey.).

The day’s target audience was audiologists, speech and language therapists, and teachers of the deaf; essentially all flavours of professional that we’ve had wandering through our lives these past six months. As you might imagine, a number of chords were struck, not least by the parent who gave an eloquent, humorous and reflective account of parental support needs. He referred back to the early days, soon after the diagnosis of his son’s deafness, when they could barely move for workers and how, now his son has been implanted for some 10 years or more, the visits have dwindled regardless of need.

We are at the start of this process – our current list of regular visitors and appointments stands at:

1. Education service Teacher of the Deaf (once a fortnight)
2. Cochlear Implant Team Teacher of the Deaf (once a quarter or so)
3. Cochlear Implant Team Speech and Language Therapist (once a quarter)
4. Auditory Verbal Therapy (once every two-three weeks)
5. Audiology Mapping sessions (once every four weeks for each ear – haven’t quite worked out whether they are in sync or not)
6. Community Paediatrician (once a quarter or so)

All excellent to a greater or lesser extent…but where have we gained the most insight and support? The parent speaker hit the nail on the head and the Ear Foundation is fully aware of the key element – its other parents we need. You cannot underestimate the relief felt when you don’t have to explain anything and you can cut to the chase about comparing harnesses, mapping experiences and therapists.

Hopefully, we can also compare homework answers. We’ve recently entered the world of ‘The Protocol’ a sizable folder of tables and forms that challenged our knowledge of Tom’s language development – and we thought we were attentive parents.

‘Does he pronounce ‘d’s and ‘l’s?’
‘Does he make and understand complex statements involving two or more actions?’

We’d tried to be good, liberal parents and not get involved in comparing Tom to other children; now we have forms to help us do it in a thorough, structured fashion. I fear we might get told off and kept behind after class– between the appointments schedule, work and looking after the little blighter something has to give.

Watershed Weekend

Tom went to stay with my parents this weekend. For the first time since his illness, we took advantage of Hotel Nanny and Papa while we snuck off to London to catch up with friends. All the assorted professionals in our lives will be delighted with this news as were the hosts, who were thoroughly entertained by Tom’s comedy repertoire, insatiable desire for stories on grandparent’s knees and willingness to succumb to requests for hugs and kisses.

We coped too. Numerous friends greeted us with ‘Where’s Tom?’, he being far more popular than us these days, but his absence allowed us to have an ill-advised quantity of red wine and stay up far, far later than was good for us.

Tom barely noticed us when we went to pick him up, ensconced as he was in Nanny's armchair looking as sweet as you like. He'd managed to talk his grandparents out of lunchtime naps which may well have contributed to the 'overtired' tantrum-to-end-all-tantrums we experienced when we got him home. That's payback for you.