Gearing Up for Surround Sound

Today I sit and reflect having just passed the halfway point between Jaime's surgery to receive her second Cochlear Implant and her second side "switch on".

Two weeks ago our home was filled with an air of anticipation and the usual anxieties that go along with watching your precious child undergo surgery.

Sunday evening Jaime was very exited...

"I go to the hospital when the sun wakes up..."

Yes

"I get my new Coc-ear Im-plant?"

Yes, Jaime, you get your new Cochlear Implant

"I get two Coc-ear Im-plant?"

Yes Jaime, you will have two Cochlear Implants

"Yay, Woo-hoo! Yippee!"

The undeniable joy expressed by Jaime at not even 3years old is inspiring. It's hard to know how much to explain to a 2year old about her upcoming surgery, however, its clear that she has a reasonable understanding and is becoming very excited!

Jaime is able to tell anyone that asks (and for that matter anyone that will listen!) that tomorrow is the day she gets her second "Coc-ear Im-Plant" and that first the doctor will give her some "special medicine" to make her sleepy.

The process has certainly been helped along by the fact that a very special friend of ours, Hamish, underwent Cochlear Implant surgery only a week prior. We visited Hamish in the hospital and discussed how brave Hamish had been; Jaime was able to see the drip and the head bandage that she too would be wearing in a weeks time. These two toddlers share a special bond that us as their parents will never understand, they share a special world all to themselves and take great comfort that they are not alone, someone else is the "same-same".

Time had come for Jaime's turn, we woke early and jumped in the car (much to Jaime's amusement as for some reason the sun had forgotten to wake up), and began the long drive to the hospital. Jaime coped incredibly well and was very accepting that we were not allowed to have any breakfast today (she may have been promised a chocolate frog post surgery... hey bribery... I mean, incentives... are sometimes more than appropriate). 

Once we arrived at the hospital Jaime marched through the front doors with her head high, clearly proud about what was going to happen today. We were shown to our room on the children's ward and settled down to some morning TV whilst awaiting our pre-op meeting with our anaesthetist.

Jaime falls into the category of an "institutionalised" child, sounds awful doesn't it! The term (one I don't really like, but I don't choose these things) refers to a child who has undergone multiple hospital admissions, surgeries and procedures. For these children they can either be confident in a hospital setting as they know the ins and outs, or they can be highly sensitised, carrying a fear of doctors, needles and procedures. Our anaesthetist was absolutely amazing, she started with a phone call the evening before surgery to discuss how Jaime normally reacts in hospital and how best to prepare her for surgery. The morning of surgery the anaesthetist met with us and introduced herself to Jaime and assessed if there was a need for a Pre-med (a relaxant to reduce anxiety), to her surprise Jaime was confident and ready to go. Satisfied that Jaime was ready for her turn in theatre the anaesthetist left to prepare in the operating room. I was handed a hat, gown and booties to wear so I could accompany Jaime.

Jaime and I sat on the edge of the bed, my little 'baby' all smiles (and giggles at mummy's "funny hat"), swinging her legs in anticipation. Around the door frame appeared a smiling face... "Ready to go?" chimed the nurse. Jaime jumped up and took the nurses hand and marched her down the hall to the lifts and into the operating room.

We were sat on a chair amongst tables of 'blue sheets' covering all the sterilised operating equipment, I felt small in the middle of that room, and would expect a small child to feel tiny; not my little girl however, like her father, she saw this as an opportunity to be the centre of attention! She was boss! "I do it!" She took the anaesthetic mask and placed it over her own face, smiling the whole time she drifted off to sleep, gradually becoming heavy in my arms.

With a quick kiss I left my baby girl in the capable hands of the anaesthetic team and her amazing surgeon.

Two hours ticked by, each second seemingly taking two. Although time was dragging its heals I felt surprisingly calm, reassured that my daughter was safe. At the two hour mark her surgeon came and met with me, the surgery was deemed an overwhelming success, placement of the electrode was as good as you could ask and the in-operative check of the electrodes showed that they all registered as expected. An hour more passed before I was able to head into the recovery room to see my child, check that she was indeed 'OK' with my own eyes. I scoured the recovery beds, glancing over half a dozen adult sized lumps of blanket, sleeping off their anaesthetic. Finally my eyes fell on a familiar figure, a little doll curled up peacefully, sleeping, resting. I enjoyed some lovely conversations with the nursing staff whilst we waited for Jaime to wake enough to return to the ward.

The next five hours where the hardest, disoriented from her surgery and uncomfortable from the pain we enjoyed cuddles broken by amazingly spectacular toddler tantrums! Not least of which was the demand for sandwiches, who would blame her, she hadn't eaten all morning; we certainly didn't have to worry about getting her appetite back. At the five hour mark we had a breakthrough, with a dose of strong painkillers the tantrums were banished and in their place emerged our fun loving girl. This marked the last of any evidence that she had just emerged from over 2hrs of surgery (aside from her large head bandage of course!)

After an overnight stay it was time to head home, Jaime was again in high spirits and in charge of her own suitcase ("Mummy, I do it"), happily trundled past the rest of the ward exclaiming "Hab a nice Day!!"

The following day we dropped Jaime's brother (BabyB) off at daycare to have a mummy and me recovery day. Whilst there Jaime was eager to go and visit her friends and wanted to stay and play, with a frown I had to tell her it was a 'stay at home' day, but promised she could return next week. It's truly amazing how quickly kids recover.

Now two weeks down the track we count the days until her "other ear, other Coc-ear Im-Plant" is switched on. 

During this time we have busied ourselves (4weeks feels like forever when you are excited!) We made the decision to share Jaime's headbands, that she has used throughout her journey for her Hearing Aids and Cochlear Implant, with the rest of the world. Sewing is a distraction and a hobby for me and I have taken much joy in being able to help both children and adults feel confident in wearing their hearing devices. Its a seemingly small thing that has turned out to mean so much to those that have received a headband.

The headbands have taken on a new role too, one that was unexpected but absolutely has made me smile (and shed a tear or two). During the process of making the first headbands I was asked to make a few special requests, these were for some very special mums, dads and siblings to have 'matching' headbands and bandanas. 

For our CI recipients headbands can play a much bigger role than a decoration, they serve as a vehicle to encourage recipients to wear their cochlear implants, whether that be in the early days when the processor is new and daunting, or further down the track so that a child(or adult) can partake in activities such as sport without worrying about their processor falling off. 

These families were able to show their kids that if mum/dad/sister/brother are able to wear their headband with confidence so can the child.

I was absolutely moved to tears when a beautiful daycare centre took this a step further. When they heard that Hamish (our little friend from earlier) was having a hard time adjusting to his new CI they surprised him, when Hamish arrived at daycare, all the staff and children were wearing headbands and bandanas to show him support and encouragement, at first he remained hesitant, but as the day progressed, success! Hamish finished the day by wearing his bandana and CI! I love to see our community rally together at support each other.

I can only hope that we and every other family traveling this journey can experience this same community support. It takes a village to raise a child.

We love including you as part of our amazing 'village' and I encourage you to share your story so that others can feel less alone. I also encourage you to reach out via your Cochlear Implant Clinic, Hospital, Audiologist or Early Intervention service, ask to find a family that is travelling your same journey. Don't sit silently in the waiting room, talk to the other parents, they are probably itching to say hello but may just be shy; if you get the chance to meet another child that is undergoing their CI surgery, see if your child can be involved to show them that it's 'OK'; band together and create the village you want to see raise your child.

Take care... We will be checking back in after Jaime's 'Switch On'

Hey presto! The Deaf can hear...

Having a deaf child, we have had to learn a lot, and fast! With an appointment at the Cochlear Implant Clinic coming up next week I felt it timely to share what we have learnt about the Cochlear Implant and why we are choosing to have Jaime implanted (if she is eligible).

Firstly I will explain a little about Jaime's deafness:

Jaime suffers sensorineural hearing loss, this can also be referred to as nerve deafness.
Although the problem stems from the inner ear (cochlea) rather than the nerve itself, without use the nerve can deteriorate (use it or lose it) hence the sooner deafness is treated the better the outcome (not to mention the learning capacity of young children and babies).
In most cases of sensorineural hearing loss the small hair cells within the cochlea are malformed/absent (in the case of congenital hearing loss) or damaged (in the case of acquired hearing loss). In other rare cases the cochlea or hearing nerve itself may be absent or malformed hence Jaime will require both an MRI and CT scan to ensure the inner structures of her ear are able to accept an implant, and to also ensure her hearing nerve is intact.

Jaime's hearing loss is congenital, meaning that it was either caused by abnormal development (a glitch in the making of her inner ear) or inherited.
We still don't know the exact cause of Jaime's hearing loss and are awaiting genetic testing to determine if she inherited her deafness (despite my husband and I having normal hearing).

*Before the development of a vaccine, maternal rubella or German Measles was also a common cause of congenital hearing loss.


The treatments for sensorineural deafness vary depending on the level of hearing loss and whether the loss is in one ear or both ears.
Jaime suffers a loss in both ears but to a differing degree- her left is a profound loss (>90db) and her right is a moderate-to-severe loss (>70-80bd)
When hearing loss is mild to moderate hearing aids can often help by amplifying sound. For more severe levels of loss, sometimes hearing aids are just not enough. This is because although amplifying sounds makes them louder, it does not necessarily make them clearer. If sounds are becoming distorted by the inner ear, even the best quality hearing aids may not be enough to establish "normal" hearing.

This is where the cochlear implant steps in...

The Cochlear Implant or 'bionic ear' is a marvel of medical science... hey presto... the deaf can hear!

But how?

Within the inner ear is the Cochlea, a small shell shaped canal, within this canal sit thousands of tiny hair cells. When sound waves enter the ear they stimulate the hairs which convert these physical movements and vibrations into nervous impulses that are sent to the brain and interpreted as sound.

A cochlear implant is an electronic device that is surgically implanted - so it bypasses the damaged inner part of the ear. Unlike hearing aids which simply amplify sound at the outer ear, a cochlear implant converts sound waves to electrical impulses that directly stimulate the cells within the cochlea in a way that mimics your natural hearing.


Below is a diagram of a cochlear implant and its components

How it delivers sound...

The speech processor worn behind the ear (BTE) captures sound waves and converts them into digital code.
The digitally coded sound is transferred from the speech processor to the implant by the coil which sits over the implant (held in place by a magnet within the implant).
The implant converts the digitally coded sound to electrical signals and sends them along the electrode array, positioned in the cochlea (inner ear).
The implant's electrodes stimulate the cochlea’s natural hearing nerve fibres, which sends signals to the brain that are interpreted as sound.

...hey presto! The deaf can hear!


Jaime is currently a likely candidate for one cochlear implant to replace her hearing on her profoundly deaf side, we are awaiting further testing to determine if she will require two implants to get the most out of her hearing.


(I will speak further about the selection process for cochlear implant recipients and the advantages of bilateral hearing later)


Information regarding sensorineural hearing loss and Cochlear implants curtesy of
http://www.cochlear.com/au

Quiet Beginnings

My story begins in February of 2012, after feeling under the weather at work I returned home via the chemist to pick up a pregnancy test, mothers intuition perhaps? I was pregnant!
Now expecting our first child my husband and I were elated!

The next 9months were filled with excited planning and dreams of the little being that was rapidly growing in my belly.
"Birth-day" arrived and we welcomed a beautiful healthy baby girl into the world. My little angel was absolutely perfect in every way!

At two days old the nurses arrived to check Jaime's health and hearing, my husband was out at the time and I was not bothered in the least as everything was going to be fine, or so I thought.
I still remember watching the nurse hunched over my tiny baby laying content in her cot, "she has been there a long while" I thought to myself, and then she looked up and told me, "Jaime is not responding as I would like, it might be fluid in her ears, I will come back tomorrow". I was shocked but confident that tomorrow all would be fine, tomorrow came and went and another failed hearing test, this time I cried. Was my perfect baby not so perfect? How could this be?
Guilt, bewilderment, heartache... What went wrong?
I felt silly, how could I think this way about my child, my beautiful baby, was there truly something 'wrong' with her?
It was another month before we had a diagnosis, a month of both coming to terms with the thought that my baby might be deaf, but also a month of denial, 'surely they will turn to me and say it was all a mistake!'

I have a medical background and I am still undecided if this has helped or not, I knew that deafness can be managed, technology exists that can help my baby hear and achieve, but how will I cope, how will I look after a baby with additional needs?

At four weeks of age Jaime was diagnosed with sensorineural hearing loss, she is profoundly deaf on her left and has a sever hearing loss on her right (this means she can only hear sounds 80db and above)
At seven weeks of age Jaime was fitted with her first pair of hearing aids. This was an exciting step forward- the thought that she may, for the first time, hear her mothers voice, I had never thought about how much this could mean. Jaime's 'purple pair' were fitted and we waited, Jaime paused, deep in thought, hearing... Something...? A clap.. A blink.. Success! We returned home with hope for Jaime's future.
As we progressed through multiple appointments and fortnightly fittings for new hearing aid moulds, it became clear that her 'purple pair' might not be enough, this sent us down the path of the cochlea implant.

Before you judge my feelings of disappointment at learning that my baby is deaf, please I urge you to read "welcome to holland" I was handed this story not long after being given Jaime's diagnosis, I felt like finally someone was reading my mind...

My child is still perfect, perhaps not what I had expected or planned, but she still lights up my world, this tiny being that I first lay eyes on and with whom I fell instantly in love.
This tiny being is still exactly the same, only my knowledge has changed.