We were left with the choice of an auditory brainstem implant or a world of total silence for Theo. The greatest reason against proceeding is the invasiveness of the operation and of course there is the risk of the device failing which the team in Manchester told us will of course happen as young people now will live to 90/100 and there’s no guarantee a device will last that long. We don’t know how long it will last.
Professor Colletti gave us a paper on all the risks and its frightening but of all his 88 surgeries none have had serious complications in or post surgery. The surgery will be carried out by Professor Colletti himself, the most skilled and knowledgeable surgeon in the world on ABI implants in adults and children. He has done 88 surgeries and a surgeon in the UK has done 6. Professor Colletti has confirmed that when he opens Theo up if it looks like there could be major risks he will then close Theo up and not proceed.
We know that Theo will always be deaf and we have come to terms with that and both Stephen and myself are learning British Sign Language and even Harry his 3 year old brother has c 50 signs so far. The thing that we found confusing is that a lot of deaf people do have a degree of hearing, even those described as profound. They can be aided with hearing aids, FM monitors, cochlear implants etc, none of which would work for Theo. We have been on so many deaf weekends and they all talk about the technology available to make the most of the hearing the child has as even unaided, a lot of profoundly deaf people would be able to hear very loud sounds such as sirens, alarms, cries etc. Theo has no hearing so all these gadgets are never going to be of use to him unless we give him an ABI. I want him to hear a fire alarm, a car when he’s crossing the road etc. If we can give Theo spoken language then it would be a miracle and he has the ability to communicate with anyone he comes into contact with not just his mum, dad and brother who will have BSL.
Some might ask why can’t we just wait and let him make the decision when he is old enough? Unfortunately we don’t have that option. Prof Colletti has said the optimum age for this surgery is 9 months. 1 month from where Theo is now. 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 one year is thought to be best as after this age the plasticity of the brain begins its decline. The team in Manchester told us that if the first implant works then 2 years is the timeframe to get the other side implanted to give Theo the best chance of hearing.
There’s no guarantees on anything in life but I don’t want to look back in 10 years time and question what if we had given him this would he be hearing now and at least by doing this I know we have done everything possible to give him a chance of hearing and hopefully it works.