6th May 2015
Ok, so for those of you who have been reading my blog this week, thank you! For those of you who have just joined in, thank you to you too - please feel free to read backwards and see what's been going on.
As day one was diagnosis, day two hearing aids, day three will be about cochlear implants.
Our Princess was identified, at the time of her diagnosis, as being a potential candidate for cochlear implants. For us, this was something we had never heard of - what on earth were they, how did you get them, what did they do - aaaaahhhhhh! So many questions!
Thankfully, once again we reached out to NDCS, Sound Friends and our lovely Teacher of the Deaf and got a wealth of advice, information and support.
I will try to explain cochlear implants (CIs) in a nutshell for you - sorry if it's too simple, I'm going back to the days when I knew nothing about them so that I will start with the basics.
Basically cochlear implants involve placing an electronic implant inside the cochlea, which will convert sound into electrical impulses and send them up the auditory nerve to the brain.
Patients who are suitable for CIs will have a severe-profound hearing loss (depending on locality this could be in one or two ears), but have relatively normal anatomy (as confirmed by MRI & CT scans). Some abnormalities are compatible with CIs and others aren't, I won't go into these now as its a complex world of diagnostics and I couldn't possibly include all the necessary details.
The assessments for CIs usually involve the brain scans (to check the patient has suitable cochlea & auditory nerves), hearing tests (to demonstrate how bad the patients hearing is - it's ironic that you fail if you can hear too well, lol!) and numerous appointments with the implant team to ensure the family is ready to commit to CIs.
Princess was scanned in October 2014, aged 7 months - it was her first general anaesthetic and we were nervous about both that and her results. Thankfully, she coped very well with the anaesthetic and we were allowed Tom go home a few hours later. After two long months, we received news from the surgeon that her scans were perfect and she was suitable for CIs.
He hoped to implant her in January! She would be the youngest in Northern Ireland at that time (and currently still is), receiving her implants at only 10 months old!
Surgery was successful and our little Princess recovered well afterwards. Inside her head was now two electrode arrays, one in each cochlea, with the capability for 12 different frequencies and also a magnet, which would be used to connect to the outside portion of the implant on the time came for
activation.
Activation day for us came 5 weeks later - an emotionally charged day full of expectation and cautious excitement as to what would happen when they "turned on her Magic Ears". We had been given the external equipment home to wear and get used to a fortnight before, so Princess was happy to put on the CIs, which was obviously the first hurdle.
The external equipment is very bulky looking on a baby such as our wee Princess. Firstly, there are two battery packs, which at this stage are on long wires and have clothing clips to be attached on the patient's back - thankfully we had been given a tip, which we are still using, to sew a baby's scratch mitten onto Princess's vests, into which we pop the battery packs. This means that they are much harder to lose and also that they don't hang around her, meaning she would be more likely to pull at or eat them!!
Secondly, there is the external magnet which connects the internal and external systems together. Once this connection is broken, the patient's hearing returns to pre-implant state, ie Princess is once again profoundly deaf. This magnet acts as the transmitter, sending the information inside her ears.
Lastly, but most importantly, there is the sound processor, which hooks over the ear like a hearing aid. This is also where the microphones are located, meaning that the place where sound is received (the processor) for an implant user, is the same as for a hearing person.
My little Pricess has now been "switched on" for 10 weeks and it's been a miracle for her. She can
hear loud noises (doors banging, dogs barking, brothers shouting), but also quieter noises such as our voices and her musical toys. She is vocalising almost constantly when her CIs are on and is also starting to copy noises.
Of course, every child and adult is different and there are many factors that contribute to the success of CIs, but for some, to be given the chance to hear any sound or even to hear themselves make sound, is worth it.
There is a lot of controversy about cochlear implants or other hearing technology between the deaf and hearing communities - my personal opinion is that everyone's family is unique and each must
choose the best path for their own needs.
We have chosen to get our Princess implanted to allow her early access to sound (and hopefully speech and language development), that will enable her to be successful in mainstream school. However, we are very aware we have made a huge decision on her behalf and to ensure that we don't push her into a world in which she feels uncomfortable, we have also opted for our family to endeavour to become bilingual (English and BSL). We retain very close links with Sound Friends, where she can meet other children with hearing loss - some with technology and some without; and hope in the future to join the local Deaf community in an effort to build links on Princess's behalf and also help us learn to sign better.
Once again everyone, thanks for reading, please do get in touch with any questions, I promise I won't bite!
Goodnight,
Sara xx
UPDATE: I though I would share a question I received in relation this CIs on Facebook - the person wanted to know why you would turn your implants off at all once they had been activated, my apologies, I had intended to include that info, so that's for asking!
My answer:
Thanks!
As the outside equipment is bulky and non-waterproof (although some waterproof kits are available), it is removed for sleeping and anything involving water (eg Bathtime, swimming etc). Humidity can also cause a problem and they can become uncomfortable if a person is feeling unwell or suffering an infection around the implant site. Of course, they are a piece of technology so they may need to be removed for repairs also (we do get spares, but some people manage to have a lot of breakages!)
Thanks for asking! CIs were new to us until it became an option for our Princess, then we had a lot to learn!
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