“He won’t have to be Deaf for long”

In the past 4 months, I have made so many trips to audiology and ENT, it’s mind-boggling!

The path to identification was a very different experience to that which we had with Zoe, 14 years ago. This time round we went through newborn hearing screening and were referred to audiology after two screening sessions resulted in ‘refer’. So we had confirmation when Carter was 15 days old as opposed to confirmation for Zoe at 15 months.

The screening sessions themselves were bizarre! I have been in many meetings where the process was discussed and the training for the screeners was mentioned. One of the things that stuck in my mind was that the screeners were trained to be very impartial in their dealings with the families. That they were not to use the word ‘fail’ and were to explain to families the many reasons for a ‘refer’ result eg fluid retention, noise interference, hearing loss. The main point was that the screeners are not to ‘scare’ the families, or advise them.

However, our experience of newborn hearing screening was different.

The screener entered the room pushing a trolley with a laptop on it. This was a shock initially as I had in my mind that the equipment they used for the screening was small handheld device. Instead it was a laptop and the a ‘half a headphone’ looking device that was held to Carter’s head.

ABR (image from Google)

I could see the laptop screen as the screening was happening. The graph had a green bar at the top and as the test began a black line appeared and tracked along the bottom of the graph, nowhere near the green bar. The screener looked unsettled and suggested that we try the other ear, same result. This created a ‘refer’ result.

The next day, another screener came in and repeated the test. The same result showed on the graph. I asked the screener was she expecting to see the black line to track within the green section her response was ‘yes we would hope so’. The result was ‘refer’ again.

The screener explained to me that we would need to go and see an audiologist for testing and that they would confirm/clarify what was happening. Then she dropped a clanger! she said “if he is Deaf, he wouldn’t have to be Deaf for long as they do cochlear implants very quickly now a days”! She then went on to tell me about the lovely cleaning lady who worked at the hospital – she had a cochlear implant and she could speak clearly, she wasn’t lonely and was happy! she even offered to bring the cleaner into the room for me to meet!

The ABR process was completely different! The audiologist was lovely! She gave me time to get Carter off to sleep and gave me breaks in the testing when she could see that he was beginning to stir.

She was also very unbiased and gave me information about everything!! (She had no idea that I worked in the field) – I felt like a mystery shopper! It was excellent to know that following the ABR where the results were conclusive and showed that Carter has a ‘profound bilateral hearing loss’ she proceeded to present me with information on hearing aids, NZSL, cochlear implants the lot! She even presented me with the ‘Sign with your baby’ DVD 😉 – she didn’t realise that I am the presenter on it 🙂 Sign with Your Baby

I really appreciated her balanced approach.

Hearing Aids:

We now have regular visits to audiology for new molds – due to the rate of growth of a newborn’s ears! The hearing aids are pretty powerful as they need to amplify the sound so much to meet Carter’s levels.

They give out a lot of feedback although the aural gel seems to be helping with that. He cannot hear the high pitch whistle, but I can. And so can shoppers in the mall (had a few strange looks from people at the shops!)

I am a bit slack with putting them on. Many days I am in the car and down the road when I remember that the hearing aids are still in the box on the table (oops)

I find that Carter tolerates the hearing aids more when he is in his car seat – I like them better when he is in his car seat as the feedback seems to be less.

Part of the newborn hearing screening – identification process, is a visit to the ENT.

We were given the appointment to see the ENT (7pm on a Thursday night!) We saw a locum who had come to Wellington to help reduce numbers on the waiting list for ENT. The appointment should really have been an ‘E’ appointment because it was all about Carter’s ears. He didn’t mention or check his nose or throat.

The focus, from the ENT’s perspective, was to discuss the process for cochlear implants and begin the process. He was taken aback when I politely declined the offer of bilateral cochlear implants. He had never had anyone decline and it didn’t sit well with him. He asked me to outline to him what I saw as being the ‘pros’ and ‘cons’ of cochlear implants – I have to wonder if he asks other parents, who do opt for CIs, to justify their decision also.

I tried to explain that CI’s are not off the table for discussion, but right now they are not something that we want for Carter. I see it as being elective surgery and the ENT did not.

He referred us to a local ENT – meeting her was completely different. She was lovely! Very experienced, knowledgable and respectful. She was happy to take the time and talk through everything. She has left the door open for us to keep in contact with her and ask questions or clarify points as needed.

One professional I have not mentioned in this is our Advisor on Deaf Children (AODC) – I’m sure it must have been weird for her to receive a referral with our names on it. As in my previous work as an AODC we were in the same team:) We are very fortunate to have her. Again she is balanced and respectful. She is a Speech Language therapist and knows NZSL. She brings with her a wealth of knowledge and experience. She is happy to have as much or as little input with us as we see fit.

So although the past 4 months have been a roller coaster of medical visits – we have encountered some fantastic professionals in the field. We are grateful for their work with us.

Just as an aside – The phonak hearing aids came in this cool little bag. Turns out to be the best bottle bag ever! perfect size and keeps the bottles warm 🙂 Thanks Phonak.

 

 

 

 

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About fergfam4

We are a bilingual bicultural family living in NZ Deaf Dad, hearing Mum, And 3 kids:) (2 Deaf and 1 hearing)
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3 Responses to “He won’t have to be Deaf for long”

  1. What a great read. You write well Bridget. I love the idea of a “mystery shopper” and perhaps you may have stumbled on a very very good idea to test the efficacy of a number of government departments. Looking at your post name FERGFAM5 I couldn’t help but think it was a good thing Oly’s surname wasn’t Oxford …. Oxfam5 wouldn’t have worked quite so well.

  2. Robyn says:

    Interesting article! Reactions from professionals were shocked when they say your child has failed hearing loss, I told them off for saying FAILED! They made parents feeling guilty of having not so healthy child because of FAIL hearing loss! I said to them, I’m happy to know that my child/ren are deaf as long as they’re HEALTHY more than hearing loss! One specialist doctor said that I was cruel & I said to him, were you aware that I’m deaf & does it tell you that I’m HEALTHY! Regardless of my deafness!! He was speechless!! I’ve met other mums in my signing classes & discussed how they were feeling after diagnosed been confirmed. They were upset & guilty but not happy with the information as they were referred to oral organisation & CI clinic. No info about Auslan etc after 4-5 yrs (their children ages now) so sad for the mums!

  3. Phoenix Llewellyn says:

    Great analysis Bridget, and one from an informed professional. I am still surprised by the “he won’t have to be Deaf for long” comment….so very deficit focussed. I wonder what difference it would have made, had they known your own family history, i.e. your ‘Deaf family’ and Signing culture….?

    Whatever your decisions into the future for Carter, he has the very best start in life because of your family’s knowledge and experience in the Deaf world. May this little guy grow up with a full wraparound of language and technology to support his learning and development. What a lucky boy to have you as parents….

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