Alice’s First Appointment With David Selvadurai

“You’ll hear from St. George’s in a couple of days” we were told.

As it transpires, the soonest we could get an appointment at St. George’s was some six weeks away. Having just had the news that little Alice was profoundly deaf, there was no way we could wait that long.

Immediately following the ‘diagnosis’, we all went down to our flat on the Devon coast for a few days to try to take it all in. There was no point sitting around at home navel-gazing and, whatsmore, the children (we have a son, Joseph, who is 3) needed a holiday.

Whilst sitting down in Devon and trying to come to terms with the news, we decided that the best course of action was to try to arrange a private appointment to see one of the doctors from St. George’s – but who? We had no names and no leads. The admissions staff from the hospital were a little less than forthcoming.

Fortnately, a google search turned up the name of David Selvadurai, Consultant ENT surgeon, who heads the Cochlear Implant Programme at St. George’s. We phoned his PA and managed to arrange an appointment for the following Thursday.

Armed with a list of questions, we arrived at the Lister Hospital in London to see Mr. Selvadurai. He had not seen Alice’s notes, but from the letters we brought with us, he managed to get a good picture.Instantly sympathetic and reassuring, David then went on to explain about a condition called ‘Hair Cell Dyssynchrony’ that could explain the differences in Alice’s OAE and ABR tests. He suggested we see through our appointment with St. George’s Audiology and then contact him again when they had had a chance to form a better opinion.

He also talked about Cochlear Implantation and how, children with this ‘dyssynchrony’ often did well with an implant. He suggested we get aids for Alice as soon as possible as she would need to have tried these first to see if the would provide any benefit.

We thanked him and shot off home to visit Google, a dear friend over these past 4 months. And with that, we entered the world of Auditory Neuropathy/ Auditory Dyssynchrony (AN/AD)

Alice’s First OAE / ABR Tests

After 2 weeks of behavioural tests, Alice finally arrived at Queen Mary’s hospital, Roehampton, for OAE and ABR tests (to be done while Alice was asleep) to try to explain the inconsistencies in Alice’s behavioural tests.Alice, very kindly, went to sleep of her own accord, so both tests were able to be conducted while she rested rather than under general anaesthetic.

Throughout the OAE tests, the audiologist kept reassuring us that everything was going well. During the ABRs however, there was a rather uncomfortable silence. Alice started to wake up just as the tests were finishing but, thank goodness, they had the results they needed.We had looked at one another throughout the ABR test to try to work out why nothing was being said. As the audiologist sat us down, this became clear.

I’m not sure I’ve ever seen a medical professional shaking before, but the audilogist clearly wasn’t relishing passing on the news any more than we were relishing receiving it.

“As you know, Alice did very well in the first set of tests, but unfortunately not so well in the ABR”

Without any further explanation, he then went on to tell us not to worry and that there were “wonderful things they could do with hearing aids and cochlear implants these days” and that there were “special schools that could help”.

“But it’s not like she’s profoundly deaf” we said

“I’m afraid she is” was the reply “I’m going to refer you to St. George’s who will be able to help – you should hear something in a few days”

And with that, our journey began. It took about 40 seconds for us to get out of the hospital. Neither of us talked to each other, we just wanted to get out of there. I popped to the loo on the way out and that is when the gravity of the situation struck.I don’t normally cry, but to be told that our beautiful, perfect, little daughter hadn’t ever heard us talking, calling her name, telling her that we loved her…..I still struggle to take it all in.

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