This was challenging to write but I feel it needs to be shared to inform people’s thinking.
Towards the end of 2017 Oliver and I began to talk about the possibility of Carter having cochlear implants. There were a number of things that triggered the conversation but most importantly it happened because we wanted to make sure that what ever decision we made, we were fully informed and comfortable with the decision. Neither of us felt that we could say an outright ‘no’ to the CIs without going through the assessment process and talking to the professionals at the Southern Cochlear Implant Programme.
Given the roles that we both hold, and have held, in work and in the community, our decision to begin the assessment shocked people. For this reason we decided not to talk openly about it.
We both had preconceived ideas about what the assessment process would be like. I am pleased to say that we were completely WRONG!
Our Advisor on Deaf Children from the Ministry of Education has always been an incredible source of information, support and reassurance. She started the process and not long after that I had a phone call from the hospital. We had earlier been discharged from the ENT caseload as we had declined the offer of bilateral CIs following newborn screening, so they were wanting to make sure that I understood what the assessment was for.
It was decided that the MRI didn’t need to happen prior to the meetings with the professionals – as it normally would. This was a relief because it really gave us the space to talk to the professionals without the added pressure of possibly having Carter under a General Anesthetic for no reason.
The CI Programme made contact with us and asked who we preferred to have for our interpreters for the meetings both here and in Christchurch. This was a great start as we really felt valued and that NZSL was respected. They organised with iSign to have interpreters at the meetings and we met with the Audiologist and SLT from the CI Prog. The timing worked out well for this meeting as Zoe was on leave from school and was able to attend the meeting with us. She asked some great questions and was able to have the answers direct from the professionals. Hatten and Lisa at SCIP were brilliant they gave us space and time to think about the decision and come back to them with any further questions.
The next step was to visit Christchurch to meet with the surgeon. The Ministry of Health funded Carter and I to attend the appointment. I would have preferred Oliver to have been able to attend with me, but that wasnt funded. So just Carter and I headed down for the day.
I was SO nervous attending the meeting, I felt physically sick. I knew ‘of’ the surgeon from years ago when I was the staff interpreter at the Deaf school. I didn’t know what I was going to encounter or how I would respond to questions. I didnt want to be on the defensive but at the same time I was ready to defend our choice of NZSL as Carter’s first language. I found out I did not need to be so stressed, worried or defensive!
Carter was exhausted from the early morning travel and was asleep when we arrived at the CI surgeon’s office. I considered waking him up to give me something to focus on and take everyone’s eyes off me. In my head everyone was looking at me and questioning me on how I could be considering NOT implanting our “poor deaf baby”. In fact they were all there with their own issues seeing the variety of specialists housed in the building – they were none the wiser about who I was or why I was there.
While I was waiting a friend of ours arrived in her ‘interpreter’ role. We had notified the programme that we didn’t need an interpreter for the meeting in Christchurch as Oliver was not able to come down, however that message was not passed on. But seeing her was wonderful and made me relax. Not only is she a fellow NZSL Interpreter, she is also married to a Deaf man and has Deaf children, all of whom have CIs. So she had walked the path I was walking. Seeing her gave me strength and cleared my thinking.
I went in and talked with the surgeon. He let Carter sleep and focussed on me, I wasnt expecting that! He was very honest and direct with me with regard to the effort that would be required to ‘catch up’ on lost time for developing speech and listening. I appreciated his honesty about it being a difficult decision and that it would be a huge committment if we were to go through with it. Again he answered all the questions I had. But he stressed the decision was becoming more urgent with each passing day and that really a CI after the age of 2 would impact the outcomes.
I really appreciated the way that he valued the language and cognitive milestones that Carter has already hit. It was clear that the information shared within the programme regarding our family acknowledged the progress made and the milestones Carter had reached with NZSL as his first language.
I wanted to be able to leave the meeting with a clear decision made. However I left that office feeling even more in turmoil.
I also appreciated the surgeon giving me a deadline. He said that if we were to go ahead that we needed to do it by Carter’s 2nd birthday. This meant we really had weeks to decide and then book in the operation etc. Again this put the fear of God in me, but it was an important stage as it made me use the holiday from work to take time and reflect on everything and discuss it as a whole family. If we had to discuss and decide while still in the chaos of our daily work/school/childcare schedules, I am not sure I could have done it.
One of the biggest mental barriers for me was I could not fathom speaking to Carter. Actually using my voice with him just seems so foreign. However if we were to go ahead with the implants this would be critical to provide him with the optimal chance of exposure to spoken language to develop his listening skills. This would completely change the relationship that we have with Carter.
It is not a simple decision for any family – As a family we took the time over the Christmas break and decided we did not want to go ahead with the implants.
I now feel secure in the decision that we have made. I am sure that there are MANY MANY people who feel we have made the wrong decision, but in my heart of hearts I know we have done what is right for us as a family.
My reason for sharing this is in the hope that people’s perceptions of what families are going through following newborn hearing screening, will be more informed. The team at Southern Cochlear Implant Programme are amazing.
The decision we have made as a family is best fit for us. It does not mean we are against families who have chosen to implant their children – not at all. As parents we are all striving to do what is best for our children.
We could not have made our decision without going through the process with SCIP and talking to wide range of parents of deaf children with and without CIs. We are thankful to the SCIP team for the respect they showed us.
This has been one of the hardest decisions we’ve had to make.