We were left with the choice of an auditory brainstem implant or a world of total silence for Evie. For some the decision would be obvious but for us it has been an incredibly difficult one to reach. There are compelling reasons both for and against. I suppose the greatest reason against proceeding is the invasiveness of the operation. We are talking about implanting actually into her brain stem, past the grey matter. The risks are likened to those of any inter cranial surgery but the actual complications they have encountered in this surgery are very few, and none that resulted in any long term effects. The surgery will be carried out by Professor Colletti himself, unarguably the most skilled and knowledgable surgeon in the world on ABI implants in adults and children. Evie will be the 80th child that he has operated on.
Then of course there is the argument that we are not accepting that she is part of the deaf culture and community. I know that Evie is deaf. I have come to terms with that and am signing to her whenever I can in the hope I can teach her enough to communicate with us. I realise that she will need BSL as her primary language. Evie will always be deaf, no one can change that, but what we can do is provide the tools she needs to help her. A lot of deaf people do have a degree of hearing, even those described as profound. They can be aided with hearing aids or cochlear implants, neither of which would work for Evie. Even unaided, a lot of profoundly deaf people would be able to hear very loud sounds such as sirens, alarms, cries etc. To be born without any hearing nerves is rare and we therefore don't have the option of aiding her in any other way which of course has issues of safety as she grows up.
I also feel very strongly that although she will be part of the "deaf culture" as she grows up, right now, her most important and vital culture is her family and we use speech as our main communicator. I cannot expect wider family and friends to learn BSL to communicate with her although most of them probably would, but what we can do is also give Evie spoken language so that she will not feel excluded in her own family and friends. We will continue to learn BSL and use this with her in her close family and know that this is vital for her to be able to communicate with us, particularly now whilst she has no other form of communication.
Why can't we just wait and let her make the decision when she is old enough? If only. Unfortunately we don't have that option. When speaking with Prof Colletti he said the optimum age for this surgery is 9 months and that we should proceed "without delay". He will implant older than this but all of the research suggests that the earlier the surgery, the easier the brain finds it to adjust to the concept. Under two years is thought to be best as after this age the plasticity of the brain begins its decline. I have felt these last few months that every day I wake up is a day lost in her learning to hear. I know that older children have been implanted and are doing well but if we are going to do this then lets give her every opportunity to help it work. Both David and I have struggled with making this decision for Evie but by doing nothing we are also making a decision, which is that she will never hear. We just couldn't imagine her signing to us when she is old enough "mum, dad, why didn't you do that for me?"
I have read so much literature and research on the Auditory Brainstem implant - I have even watched the surgery on YouTube (the first two implants ever carried out in Egypt) which amazed and appalled me equally! Someone once said to me they would need compelling evidence to put their otherwise healthy child through something like that, after all of my reading and questioning I could only reply that I would need compelling evidence NOT to put her through it given that it is the only chance she will have to hear.
For those in the deaf community who question our choices, I would ask them just to imagine, if they can, that they had a child born with no hands - that they had a child that was unable to understand or participate in their primary language. Those parents would need to learn to use spoken words, and would do all they could to include their child. Imagine that there was an operation available to give their child hands. Hands that could communicate and bring them into their parent's world. It may be not as straightforward as all that, but in simple terms, that is the choice we have been given.