It is by a strange coincidence that as Graham Carrick celebrates the 30th anniversary of becoming the world’s first cochlear implantee, Oliver Campbell begins his journey to receive his implants.

At the time of Carrick’s surgery, the processor was, I am told, the size of a cupboard and could only be used in the lab. Oliver, fortunately, will receive two processors the size of hearing aids.

Tomorrow, little Oliver visits St. George’s (yet again – he was there getting new hearing aid moulds and having audiology today), but this time he will have his first taste of general anaesthetic. Oliver is having an MRI, CT and more ABR testing whilst asleep. You can’t (obviously) get a six-month-old to lie still for an hour in a scanner. I hated it when Alice went for the same tests. She was somewhat older and screamed herself to sleep as they held the facemask on. Oliver will be confused and, more importantly, very hungry.

That said, they are robust little things babies. He will probably barely notice what has happened and will be back home again by the afternoon. All we can hope for is that it passes without hitch and that the scans tell us what we want – that being that Oli’s inner ear physiology and the health of his auditory nerve are as they should be and that, all being well, his CI journey will be as successful as Alice’s.

So do spare a thought for the wee man tomorrow as he goes under at 10am.

Also, google Graham Carrick and read a little more of his story. It really is a wonder and, Professor Clark, let’s hope your invention can help our little boy too…

Little Oliver

When Ollie was diagnosed, after the initial shock, we emailed everyone that we thought we’d need in the journey, therapists, surgeons and audiologists were immediately put on notice, that their help would be demanded.  We then calmed down and took time to look at our gorgeous little boy and smile a bit.  But, in the back of our mind has always been the need to somehow give something back.  For every family like us, who are sure where they are going, is a family like us 4 years ago, that is frightened and confused and needs a friend.  We are determined to give something back and help anyone that doesn’t know what to do.  Chris and I answer every email, every comment and will always do, so as everyone needs a hand in the crazy world of ANSD.

Each child with ANSD is different and beautiful, but more importantly our children have a multitude of causes and outcomes.  We’ve found ourselves in the genetic, no possibility of getting better, CI early camp, but friends have found themselves in other parts of the umbrella (maturation, jaundice, no nerves…..).  We’re all part of the same spectrum but clearly our journeys and outcomes will vary.  Whilst this is all very interesting, for parents, particularly at first diagnosis, this means that the clinician’s plan can seem vague or parents are asked to wait and see for ages.  There are good reasons for this, but with limited information it is incredibly frustrating.

Help is at hand though!  Clever people globally are all working on improving the understanding of ANSD and more specifically wonderful, clever and practical people (I met two of these amazing women today) are working on gaining more useful information to aid parents and clinicians in choosing a pathway for their particular ANSD.

What does all of this mean?  Today Ollie had CAEPs done.  These are shown to give more information to clinicians than an ABR can with ANSD.  From our perspective it was no more intrusive than an ABR, although the smallest Campbell decided that he didn’t particularly want to play,  but a smile from such a cute young man instantly melts the heart.

We are waiting for the team to analyse the results but when Alice had her CAEPs done, it gave us confidence that a CI might work.  For Ollie this wasn’t our reason for the test, but frankly I’d go a lot further than Manchester (particularly as we get a lovely guest suite and gourmet dining at Chez Delaney) if it meant that in time, someone will benefit from this research.

We have made some new friends in Francesca and Kai and we hope to be involved in further studies.  As a call to arms to our many readers, if they ask, would you?