UPDATE (November 2012)
Since I penned the below story, Lucy has suffered another set back. Her cochlear implant has been failing for the last 9 months to the point Lucy is no longer getting the benefit from it she needs. Cochlear will replace the faulty implant, but this event has caused us to reflect on Lucy’s overall hearing for the last few years and our conclusion is that her hearing isn’t as good as it needs to be for her to do well at school. This is because one of the things deaf kids really struggle with is noisy environments, and a classroom full of 5 and 6 year olds is noisy! So we are ‘taking the plunge’ and getting a second implant for Lucy at the same time the first implant is replaced. There is a reasonable financial mountain to climb, and there are negatives to the decision (her residual natural hearing will likely be destroyed, she will have no hearing at all for the 3 weeks between surgery and switch on while she recovers). However, we believe the positives outweigh the negatives, and the positives are longer term than the negatives. Surgery is planned for mid-January – fundraising has begun at https://www.givealittle.co.nz/cause/lucymb.
Lucy was diagnosed with a moderate hearing loss when she was around 2 ½. Before that time, my wife had concerns Lucy wasn’t developing speech as soon as she should but I used to brush off her concerns: Lucy is 3rd out of 3 kids and didn’t need to speak as early as her two brothers.
However, my wife persisted and got a referral from the GP for an audiology assessment at Wellington Hospital. This assessment (9 months after referral) showed Lucy had a 50% hearing loss in both her ears. At this time we were also told Lucy would benefit from hearing aids and develop speech shortly after they were fitted. It was at this time we were introduced to the good folk at Van Asch and began learning what is involved in raising a deaf child. We were shaken by this news, but not stirred – Lucy’s hearing loss appeared ‘treatable’.
But more surprises were in store. Around 9 months after being fitted with hearing aids Lucy complained that the aids were not working properly. We checked the aids and they appeared to be working properly. After more tests it was apparent Lucy had lost more hearing – around 70-80% in both ears. The ENT specialist told us Lucy’s hearing would continue to fluctuate and probably she would lose all her hearing in due course. This revelation was devastating. We had become accustomed to a hearing impaired child but not a profoundly deaf one – the ramifications were significant and both my wife and I were ‘hit for six’.
We were promptly referred for a cochlear implant assessment and began to learn about implants. Our decision whether to implant Lucy was made easier when we considered the question: when Lucy is a teenager and knows we had the opportunity to give her access to sound and we didn’t, would she thank us for that decision? Clearly she would not. This is not to disparage Deaf folk at all – but we are hearing parents and Lucy’s world had no one Deaf in it. We accepted that at a later stage Lucy will identify with the Deaf community and possibly embrace her deafness but we decided we wanted to give her the opportunity to choose. And this meant getting her implanted.
So we elected to have Lucy implanted in one ear. Professional advice at the time was that we should only implant one ear because of Lucy’s fluctuating hearing loss. As it turns out, Lucy has regained some hearing in her non-implanted ear (for which she still uses a hearing aid) but her hearing levels continue to fluctuate (sometimes to nothing). The implant procedure was fairly straightforward and the habilitation has been too. We were also grateful that Lucy’s hearing loss was not worse – we met a number of people who have many more challenges than a hearing loss and in some regards we consider Lucy ‘got off lightly’. This is not to belittle her hearing loss but rather to reflect that ‘there but for the grace of God go I’.
However, our (unrealistic) expectation was that Lucy would immediately begin to benefit from the implant and make huge strides toward age-appropriate speech. She has made huge strides but at a much slower pace than we expected. When we look back on the last few years of her hearing and speech development Lucy has done a great job. Part of that success has been dedicated parents, keen early child care educators, Van Asch RTDs, two very switched on and ‘onto it’ primary school teachers, plus Lucy’s own ambition. We are learning to be patient with her development, and to expect more from everyone involved in Lucy’s development (including ourselves). We may yet need to fund a second implant but that is a bridge we don’t need to cross yet. In the meantime we’re very grateful for the help Lucy has received, the technology she can benefit from, and we look forward with interest (and some trepidation) to the future when Lucy takes more charge of her own life.