‘I know. It’s risky. All the speech therapists and audiologists I’ve met are completely against it.’
‘Yes, they have only just started implanting children in the States. But a boy I work with received the implant in 1991 when he was two. Now, at four, he can hear, Mary. I can tell you that much.’
This was both terrifying and exciting news. These were the first children to receive the implant, so there hadn’t been enough time to gauge the outcomes. It would take years for the recipients’ language to develop, if at all. Some people even claimed the cochlear implant didn’t work.
‘I can’t bear the thought of a surgeon opening up Sophie’s skull and implanting a foreign object into it. But what if it could help her hear better? Oh, I don’t know!’ I was torn with the indecision.
‘I think you need to meet with the experts on this. We can then talk after that.’ Linda paused. ‘I do believe the implant is the most amazing invention ever. It’s going to turn deaf people’s lives around. But you need to understand the risks involved and hear all the points of view.’
‘Can I talk to a couple of parents whose children have had implants?’ I asked. ‘The ones you know?’
‘Sure,’ she replied.
Later that night I discussed it with Li at home. ‘I don’t think what we’re doing is enough, Li. I think we should think seriously about getting the implant for Sophie.’
Li took a deep breath and sighed. ‘But it’s so risky, Mary. What if something goes wrong? Maybe we could look at it when she’s older,’ he said, anxious about the idea as well.
‘It’s best if it’s done at a young age,’ I told him. ‘They’re starting to fit children with implants from the age of two, when their brains are more receptive to language, and Sophie is almost four. I don’t think we should wait. We have to do something. If we don’t try this, we will have to resort to signing and Sophie will always be a deaf child in a hearing world, and she will never be able to communicate with Nana and Yeye.’ I felt bad throwing Li’s parents into it, but I was getting desperate.
Li seemed troubled and sat quietly. I knew that look – he wanted time to think. I pushed on: ‘Linda said the implant works, and I think Sophie should have it.’
‘Let’s sleep on it. And you . . . you should call your family and see what they can find out about it in Australia.’
I agreed and called Mum later that night. ‘Mum, you know about the cochlear implant that’s invented in Australia?’ I asked her.
‘Yes, darling. Your dad was wondering if you’d heard about it,’ Mum replied.
‘I’m looking into it for Sophie. Could you ask Uncle Alan what he thinks about it?’
‘Of course, Mary,’ she replied.
Dad rang me back a couple of days later with feedback from Dr Alan Agnew. ‘Hello, beautiful,’ he greeted me. Oh, I loved to hear my father’s voice! ‘Alan says the usual thing – any surgery has risks. But it’s not a really complicated surgery. Remember his daughter Julie? She’s an ear, nose and throat surgeon now. She said they were getting children to hear after the surgery. It’s not a miracle cure, but they are responding to sound.’
Mum and Dad wanted to believe the implant could work and Sophie would come through the surgery fine, but they couldn’t help me make the decision. ‘Remember that Mum and I always trust you. Whatever you do decide, we will back you. Take care, darling girl.’
This piece of news from Dad gave me more hope and comfort than I’d had in a long time. Li and I both went to see the ear, nose and throat specialist Dr Herman Jenkins. Dr Jenkins was in his fifties with greyish hair, glasses and an imposing physique. He appeared very gentlemanly and self-assured. I liked his quiet demeanour. He explained that recipients had to fit certain criteria to be considered for an implant. ‘To be a candidate, Sophie will need to have profound hearing loss with little benefit from hearing aids. She will require an assessment to determine that,’ he said. There would be a lot of stitches and a couple of months of rehabilitation.
‘Every recipient’s response to the implant is different,’ Dr Jenkins said. He couldn’t give us an absolute guarantee that the implant would work for Sophie, but he was confident about the procedure. ‘A successful implant involves many steps, from hearing screening through to post-operative rehabilitation. This is crucial.’
‘I see. Dr Jenkins, the Houston School for Deaf Children is against it. Would you be willing to meet with them and explain everything? They might understand you better?’ I begged him.
We walked out of the meeting feeling we had made some progress. Dr Jenkins agreed to meet representatives from HSDC, who were acting as the advisory panel for the consideration of Sophie’s cochlear implant. He also gave us permission to make an appointment for Sophie to be tested. I had mixed feelings – both worry and excitement. Even though I felt sick at the prospect of the surgery, I believed it was the right thing for Sophie. There were costs to worry about, too, but I left that to Li.
When I told Linda that I was still conflicted on whether to go ahead with the process for Sophie’s operation, she listened intently before leaning forward to ask, ‘What if you could buy the cochlear implant without the surgery?’
I suddenly knew my answer: ‘I would mortgage our house to get it.’
Linda had helped pinpoint my doubt, which was the surgery itself, not the cochlear implant. And actually, it wasn’t that I knew whether the cochlear implant would work or not. It was the fact that we had nothing to lose.
We were fortunate that Li was on his summer break during this time. Every day we debated and argued. We went for long walks while Sophie was at kinder, pushing Tom in the stroller, and talked and talked. For Li, the negatives seemed overwhelming and the pros mostly based on my faith in Linda’s opinion of the cochlear implant. ‘Mary, I feel very uneasy about this,’ he said to me gravely. ‘Shouldn’t we wait to hear the expert panel’s opinion?’
‘No one on that panel has a deaf child and they have no idea what we are going through with Sophie. Li, what are you really worried about?’
Li was silent. Finally, he said, ‘I’m scared, Mary. What if something goes dreadfully wrong in the operation? We could lose our daughter. I don’t want to take that risk.’
‘Li, this is not a high-risk operation,’ I batted back.
‘You think you know everything!’ he almost shouted at me in frustration. Christ, the stress of this decision was simply unbearable.
After many arguments we finally agreed to talk to Dr Jenkins again. He assured us that the risks from the surgery weren’t high. The major risk was that the device wouldn’t work for Sophie and would have to be removed. I continued my research by talking to parents of children who had implants and reached out to Dimity Dornan, the founder of the Hear and Say Centre in Brisbane. She was a speech therapist and a supporter of cochlear implants and was so reassuring.
Soon, the all-important meeting between Dr Jenkins and representatives of HSDC was held at the hospital where the implants were being done in Houston. The advisory panel included the principal of HSDC, two speech therapists, and an audiologist. Dr Jenkins arrived soon after Li and I got there, and then the discussions began. The experts against the cochlear implant argued that Sophie was doing well as a deaf child. But she wasn’t doing well when I compared her to hearing children. ‘Compared to what?’ I wanted to challenge them. The hearing world was always going to be the world she would be part of. Li squeezed my hand, knowing how hard it was for me to hold back. I had to bite my tongue.