A lot has gone on since we started on this journey. The purpose of this page now is to share our journey with people and hopefully inspire others when they start out and look for answers.
2 years on – 2 Auditory Brainstem Implant Surgeries. ! that failed and 1 that worked. We will forever be in the debt of Manchester Implant Team for giving theo a start on his hearing journey.
Theo is now learning to listen and to speak. Its a long journey and Im sure there will be plenty of highs and plenty of lows
Theo is our beautiful blue eyed baby boy and everyday for the last 8 months old. I have told him how much I love him and he smiles back and me and I know he loves me too but he doesn’t hear me as he is completely deaf.
We have known since Theo was a week old that he was profoundly deaf and with the added complication of his deafness being classified as auditory neuropathy spectrum disorder aka ANSD (a rare and unusual deafness) . We were distraught on hearing this news but we hoped he would be eligible for a cochlear implant after we discovered hearing aids weren’t working for him.
We had the assessment for the cochlear implant on 22/12/14 following an MRI which showed his auditory nerves were hypoplastic (very thin) and had fused part of the way down the nerve . The assessment confirmed that the fusing of the nerve was preventing sound from ever getting through and therefore cochlear implants were not an option.
Then we heard of an Auditory Brainstem Implant AKA a bionic Ear and this is Theos only hope for sound, otherwise it’s a life of complete silence. If it sounds scary it’s because it is!
There are only a handful of specialist surgeons worldwide who are able to implant a tiny device into the actual brainstem where hearing is processed. An ABI will at a minimum give him Environmental Noises but with lots of therapy and hardwork maybe even speech.