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.
We are just starting to go through testing as our 2 month old son has failed every screening and the ABR. I was hoping for some insight on how your daughter reacted to noises (if at all) as an infant and how much noise she made in terms of cooing, googoo, gaga, what not…
Thanks for your site, it has been a great resource.
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Has your son passed his OAEs? Has it been suggested that he has ANSD?
Alice did indeed respond to sounds – she still does now and again through her unimplanted ear. This is why it took us so long to find out about her ANSD. She reacted to sounds – sometimes – and gave inconsistent results in her behavioural tests. We only really became concerned when she didn’t develop any speech after she was about 1. The Doctor’s told us not to worry as she had passed her OAEs and that she was just a late developer. It was only at 18 months when she had her first ABRs that we found out she had a severe to profound hearing loss – the joy of ANSD!
By the time she was implanted – 2 years ago – she could laugh, growl and make squeeky ‘aaahhh’ sounds, but none of the normal cooing you would expect – fortunately this all changed very quickly after her implant.
I know exactly what you are going through and despite spending every day since we found out researching ANSD and the best way forward for Alice, I’m still learning more…..it’s been a whole new world for us.
Are you guys in the UK?
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