Cochlear Journey Begins.

Two BunBuns in hand and her backpack in the other, our confident, yet defiant daughter made her way to the car. Naturally, with such little awareness or understanding of where she was going. We made the short 55 minute journey to Cambridge, Addenbrooke’s Hospital.

4 years since Livy failed the newborn hearing screening, which pursued an in-depth investigation from 2 weeks old, a moderate hearing loss was detected. We have since seen a deterioration of her hearing over the last couple of years. Which has now lead us to this new journey of discovering her eligibility and suitability for cochlear implants… so it begins.

For anyone who hasn’t been to the hospital before, the sheer size of the campus is huge! If you’re attending the Emmeline Centre, park in car park 2 for the short walk round.

Livy looks thrilled, as you can see!

Livy’s first appointment where we met the professionals involved in her care was via conference call due to the COVID19 restrictions. They’ve limited the amount of travelling and admissions to the hospital.

Upon arrival and booking in, all reception staff are appropriately dressed in PPE. Due to the current global pandemic, COVID19. Despite the masks covering their smiles, you instantly felt the warmth from everyone waving at Livy making her feel as welcomed and comfortable as possible.

In just a short wait, we was taken to our audiology booth. We met our new audiologists and rehabilitation specialist, usually the speech and language therapist would be accompanying the appointment too. Livy was immediately drawn to the toys provided to distract her and keep her occupied during the checks of her ears, this was to check the condition and overall Heath of the ears, like wax/ infections etc…

Livy then had a Tympanometry test which is to assess how flexible the eardrum is. In order to be able to have good hearing you need to have a flexible eardrum to allow sound to pass through the eardrum. A small soft rubber tube is placed at the entrance of Livy’s ear. Air is gently blown down the tube with a sound that is played through a small speaker inside it. The tube then measures the sound that’s bounced back from the ear. If there is glue ear, which is fluid behind the eardrum, sound bounces back rather than going through it.

After a long exchange of series of questions, surrounding Livy’s lifestyle, her development and relationship with her hearing aids. We moved on to a Visual reinforcement audiometry/Play audiometry. This is conducted by playing varies of pitches of sounds through a device that’s attached to her hearing aid moulds. She must then link, hearing a sound with the visual reward. For example a screen appears with her favourite cartoon character or a action toy lights up in a booth. Once livy is able to associate the sound and the visual reward the volume and pitch of the sound will be varied to determine the quietest sounds that Livy is able to hear.

These devices transmit the sounds into her ears via the moulds. Behind her is the screen which lights up once she hears a sounds. (Visual reward).

We then moved on to talking about the cochlear implants in more depth. We explored the benefits, the technology, the risks of the procedure/ infections, the expectations, the reality and suitability.

First picture shows where the implantation is placed onto the bone. And the second shows the outside device which is attached to the magnet implant inside.
This is the device that is implanted inside the skull. The device sits on top of the bone, and into the cochlear.

Throughout the appointment we was consistently yet gently reminded, that not everyone who goes through the assessment process is suitable, especially for someone with such mixed level of loss like Livy.

At this moment of time Livy’s left ear falls into the criteria for implantation. Her right ear currently sits at 85-80 which is the severe loss area. Livy needs two pitches to sit at 85-90 decibels. So she just misses the criteria. Unfortunately the NHS will only implant, if the person needs both ears. They will not implant just the one ear. Livy has another audiology assessment at the end of July to confirm the levels of loss recorded today.

We must remember that being implanted, is most certainly not a cure for deafness itself, it can however have potential to make a phenomenal difference to ones life.

The results of the audiologists report. Red is right ear, recording a severe loss. Livy needs two dots to sit on the 90 bar in order to be able to receive cochlear implants. The left sits on the profound loss which is eligible for cochlear implants. But not via NHS.

Fortunately Livy has already had a MRI, which gathers information about the shape of her cochlear, which helps the professionals determine the choice of implant suitable for Livy.

If she gets that far.

Going forward, Livy has another audiology assessment which will be her third, 29th July. She will need a functionality test which is a visit in her home environment. But due to the pandemic restrictions, we’re uncertain how soon this will be. We will also meet the speech and language therapist. The team will then review their findings and decide whether livy has suitability for a cochlear implant, perhaps ending with the eventual offer of surgery and rehabilitation over the next few years.

Keep your fingers crossed.

Sleeping Livy, exhausted after her hard work.

Published by Mothering Silence

A late twenty-something mother of two boys and a profoundly deaf diva of almighty sass. In between splitting spontaneous sibling wars, curiatimg pillow forts and channeling inner superheroes. Mothering Silence documents a brutally honest truth of the trials and tribulations of motherhood. (The toughest hood.) Here you'll find the weekly ramblings of the rollercoaster life of my journey in motherhood. *Please note my style of writing is tongue in cheek.

One thought on “Cochlear Journey Begins.

  1. Good Luck for the 29th. So frustrating when you want the best for Livy. She will always have the best treatment available to her, her mum ❤ is an inspiration and has the strength of herculaneum levels to ensure she will always have the best in life x

    Like

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