Oliver was born 8 weeks early by emergency C-section after a long battle with Twin to Twin Transfusion. Oliver was the Donor baby and was born with a compromised blood supply so needless to say he was a very sick little boy.
After many months in the NICU, Oliver was finally released but needed to complete his hearing check first...Low and behold he failed and we were referred to a paediatric Audiologist. We really didn't think too much of it until we heard those words..."I'm sorry your son is deaf and has a rare condition called Auditory Neuropathy"...Auditory Neuropathy? I had never heard of this condition but the Audiologist seemed to be concerned. I remember him telling me that this was a very frustrating condition and that there were no clear answers...little did I know how true these words were.
We spent months going back and forth to different appointments trying to work out exactly where Oliver's hearing thresholds were. Oliver was 6 months old when we finally were told that he needed an implant and we went down that road. I remember sitting in the room with the Cochlear Implant team and crying because I didn't want my son to have to go through such an ordeal. I didn't want his world to be different and I didn't want to make the wrong decision...
Miraculously, just before he was to be implanted we started seeing responses and his hearing was tested again...My beautiful little baby went from being Profoundly deaf to being Severe/profoundly deaf to severely Deaf to Moderately/severely Deaf to Moderately Deaf to Mild/Moderately Deaf...over a year things had changed so dramatically and we were told that we no longer needed a Cochlear Implant...Woohoo...I was so excited not to have to go down that road and make that decision for my son.
Life continued on and we did everything possible for Oliver's language development. Initially the progress was beautiful and Oliver made huge gains but as time went on we noticed that things plateaued and his responses were not very consistent...some parts of the day he heard really well and others he didn't seem to hear at all...He didn't seem interested in anything and he started to withdraw into his own little world...He dropped all communication and the Doctors started considering Autism:( We also noticed that he reacted exactly the same unaided as he did aided...I kept telling his therapist that I was concerned but when he was in sessions he seemed fine and they were happy with his outcomes...I just knew something was not right and I was starting to panic.
The three of us
After Implant 1
When Oliver was two he was sent down to Sydney for his yearly Assessment and that's when our lives were to change...Oliver's progress was very poor and more testing needed to be done. We were sent for an ECOG (electrocochleography) and that's when we found the extent of Oliver's ANSD...His hearing was severely distorted and he was put back on consideration for Cochlear Implant...I thought...OMG we are back here again...What a cruel joke Auditory Neuropathy is...How could this be:( How could we come so far and be back where we started... was this really the answer to Oliver's delays?
So the process began and the testing continued...
When it finally came down to it there were no guarantees and everything was pointing us in one direction...We made the choice to go ahead with the implant and hopefully it would be successful.
We implanted Oliver's left ear first as it was the worst affected by the ANSD...Right up until Oliver was taken to operating theatre I was not sure if I was making the right decision...was I making the right choice for him? Would he have made the same choice for himself? Would it be successful? Would he miss the hearing he had? Would he be OK?
With all these questions going through my mind I wrote Oliver a letter telling him of our journey and how we had come to this point. I told him how proud I was of him and how wonderful the implant was going to be for his hearing future. I also explained how I was feeling whilst I was sitting waiting for him and how hard this decision was.
I was driving myself crazy but then I got the call to say he was in recovery and I could go up and see him...Once I had him back in my arms I instantly felt at ease. Oliver had a pretty rough time directly after surgery but by the next morning he bounced back and was back to his cheeky little self.
After a few weeks we finally had switch on. When that time came I was so excited to see his response...they turned on the implant and we waited...Oliver took a while to get use to the new sound that was coming in but once he did there was no holding him back. Oliver adjusted very quickly to his new hearing environment and his hearing goals quickly started being met. I was blown away by his progress and I knew straight away that we made the right decision. His relationship with his twin brother blossomed and Oliver's world opened up. He went from this socially isolated little boy to this little ball of conversation that was just bursting with his new found appreciation of sound.
Even with the success of Oliver's first implant the decision to implant his second ear was much harder. The testing process was rigorous and nothing was black or white. The questions started being asked...Do we sacrifice Oliver's natural hearing for a cochlear Implant. Would the natural hearing be of more benefit? Would the second implant be as successful? Will this be the right decision for Oliver? Could we live with the decision we make? Can I deal with Oliver being profoundly deaf?
We decided to do some cortical testing to see how effective Oliver hearing aids were being. After many appointments and many tests the results were amazing. Unaided Oliver could hear at 75, 80 and 95 decibels but aided Oliver could hear nothing at a cortical level. His hearing aids were actually making his hearing worse. We decided as a last resort that we would turn down Oliver's hearing aid to reduce the internal noise and test again. We found that after we did this that Oliver's hearing improved but he could not hear all frequencies and once he was in a noisy environment his hearing would be completely lost...so confusing:( Once again we had no clear picture :(
When we finished the testing all the information was put together and we sat down to discuss the outcome. After all the testing it was still not clear cut and the final decision came down to me. This was my worst nightmare to have to make this decision on behalf of my son. This was his last chance at acoustic hearing but it was also a chance for him to strive forward.
Was the hearing he had enough? Was the progress he was making enough? Would the second implant improve the hearing he already had? Could I live with my decision? These are the questions I had to ask myself but really I knew the answers...I had researched bilateral Implants. I had spoken to recipients of bilateral implants. I had spoken to adults that struggled with ANSD and the affects that it had on their lives. I had written my Pros and Cons up. I had done all the testing possible. I had spoken to anyone and everyone that knew anything about this condition but most importantly I had come to terms with it in my heart and my mind...my decision was yes we would proceed with the second implant.
When I thought about Oliver's hearing I thought about it in terms of quality...What was the quality of what he was hearing? Was he losing more than he was gaining or was he gaining more than he was losing?
I also realised that if I was to make this decision there was no looking back....No more asking myself...Was it the right decision? There is no looking back just moving forward....These questions have no place in a world where you have made these decisions.... Even if you chose not to implant don't ever ask if it was the right decision just know that you made the best decision with the information you were given and trust you made the right choice...
Oliver did so well with his second surgery and recovered really quickly. He did grieve the loss of his natural hearing initially but has now adjusted and is doing really well. He was actually switched on 4 days ago and is already making huge gains. The new words he is now saying are clearer and his response to sound is immediate. His balance also has improved as has his behaviour. I am so excited for my little man and I look forward to sharing this special journey with him.
Auditory Neuropathy is such a devastating condition and nothing is ever black or white... What I would suggest to any parent is to do every test possible, weigh up all your options, research your child's condition, speak to adults with this condition, speak to adults that have been implanted, do a list of Pros and Cons, sit well with the decision you make and last but not least trust yourself and the decision you make and don't ever look back - always look forward.
We now have a world of opportunity and the huge smile on my little boy's face says it all :)
Suzanne - Oliver's mum
09-Dec-2015 6:38 PM (AEST)