Monday, July 30, 2007

More on the Today Programme

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

Listen again - Friday

There is a transcript available at:

I Look so I Can Hear - Cochlear implants in Children

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, July 25, 2007

A Day at the Office

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

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

A day at the office from Jason B and Vimeo.

Radio shows that should know better...

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

Anyway, wouldn't you know it, yesterday's (Tuesday 24th July) show featured an item on cochlear implants. You can hear it until Sunday on - the item is about 2 1/4 hours in (around 8.19) - the controls allow you to jump in 15 minute increments.

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

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

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

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

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

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

Thursday, July 12, 2007

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

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

Themed raincoat/boots have been something of a feature of Tom's wardrobe this year. Unfortunately he's mixing themes currently so we have a 'dinosaur' coat with 'frog' boots. The 'frog' coat is waiting for slightly longer arms...
Clearly it's a massive sartorial error that we will have to pay for in years to come - possibly with very expensive therapy.

Monday, July 09, 2007

If you could design a weekend...

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

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

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

Saturday Morning

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

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

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

Saturday Afternoon

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

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

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


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

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

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