We’re at a horrible time in Oliver’s life as we feel like we’re in Limbo.

Things we know –

•                 Oliver hears bugger all, all the testing is pointing at a fairly stable profound loss (c. 105dB);

•                 Given it’s genetic and the outcome we have seen with Alice, he will benefit from an implant and it’s the key to giving him access to spoken language;

•                 Cochlear implants have the best outcomes the earlier they are done;

•                 The surgery for bilateral implants takes time, especially on small heads;

•                 Surgery is not without risks, especially on the young;

So its never an easy decision to put your small one through surgery, but in our heart of hearts we know it’s the right one.  So we want to get on with it, but I guess secretly wishing we don’t have to.  Here in lies the problem, we are stuck in due process, in testing and report writing and meetings.  All we want is for our little boy to hear the world and we are stuck.  We want to get on with AVT, with introducing him to noise and instead we are stuck.

So we wait…….for how long, who knows?

At least we had the message back from the hospital this morning that Oliver has been referred for his CT and MRI scans. Shame he had these last October…..

It should be such a simple question, but actually, for our ANSD babies, it’s the hardest to answer.

In standard hearing loss, you do an ABR or test them in a hearing booth. For our babies this just doesn’t cut it. Alice tested anywhere between a moderate and a profound loss within the same session and within minutes. Her hearing was consistent in that it was completely inconsistent. Even when we went for Ear No2, she was still able to completely confound us and her audiologists. Interestingly, when we ask what she hears, its anything between nothing and her new favourite, “Ghosties……..” So none the wiser. But none of that hearing was useful. She couldn’t make enough sense of it to make out speech.

But ANSD kiddies are all different; some hear nothing useful, some have windows of useful hearing and some hear well with amplification or technology that improves noise to sound ratios. Herein lies madness and it’s frustrating for parents, who want a straight answer to what should be a simple question and for professionals as they can’t give the straightforward answer.

We don’t think Ollie hears much; in the next month or so we’re going to find out where he tests in terms of VRA but last week was more exciting and much more useful.

Francesca from Manchester University has devised a test to try and capture the useful hearing in an ANSD baby. An amazing area of research and one that we are delighted to support. We have discovered that Oliver can hear, he can distinguish the different parts of speech (on a simple level consonants and vowels) and the signal can get through. The issue is that it took very loud sounds to do it – for Oliver, it was 105db, but it was still possible. For other ANSD children, the answers will be very different. It was fantastic and amazing and it will be an extremely useful piece of the puzzle for audiologists.