Cool video making the rounds showing how Cochlear Implants sound to people with hearing. Skip to 2:45 for the juicy stuff.
So now that we have a little more experience with Fiona’s new implant, I wanted to do a quick tour on how it all works.
Fiona is currently wearing the Advanced Bionics Neptune sound processor. It’s quite compact as you can see here:
The sound processor is “a miniature computer that converts sound picked up by the microphone into electrical signals that are used by (the) cochlear implant to enable hearing.” (straight from the manual).
You can mix and match various color covers to personalize the appearance.
The Neptune runs off a standard rechargeable AAA battery, although you’ll see further down this post that the “over the ear” processors use custom, smaller batteries.
Attached to the sound processor is the headpiece. Embedded inside the headpiece is a very small microphone, look for the tiny black dot in this picture:
The headpiece is also customizable with different cover colors as well. Fiona is sporting pink.
On the back side of the headpiece is a magnet. You can add and remove additional magnets to adjust the strength. We’ve also further McGuyvered Fiona’s by adding some toupee tape to help keep her from pulling it off. (No, not from my private stash…)
The head piece attaches to the processor on one side (connector plug) and the cochlear implant on the other, via a small magnet that was embedded inside Fiona’s head at her surgery. We have both standard headpieces and thicker waterproof variants. If she pulls off the headpiece, the processor starts beeping. Useful and maddening at the same time.
Here’s how it works: the sound picked up by the microphone in the headpiece transmits down the wire to the processor, is converted into an electrical signal, then transmitted back up the wire, across the gap from the magnets, into the implant and down into the auditory nerve inside the cochlea.
In a very real sense, its reproducing what the functioning cells inside the cochlea of a hearing child would otherwise do:
The Neptune processor has 3 different “programs” that are programmed by our (fantastic) audiologists to stimulate different frequencies at different levels. Fiona has already gone back once for her first reprogramming, and has several more to come. She’s currently on her 4th program. Think of this like easing yourself into the hearing world: you start with an empty room, then a quiet library, soon a restaurant and then someday a Rush concert. Neil Peart!!!
To switch programs, we attach a special device called the “Neptune Connect” to the processor to switch the mode, then detach again to keep the profile of the device small. Fortunately we don’t have to do this very often – maybe once every few days.
For her implant surgery, Advanced Bionics provided us with 2 processors: a primary and a spare.
We chose to start with the Neptune as it’s easier to manage with a small child, but our second processor is the “over the ear” Naida processor. The over ear processors are even smaller then the Neptune and are easier for older children and adults to manage, but are more challenging for certain infants who like to constantly constantly constantly pull things off their ears…
Still we have her Naida on deck, still in the packaging:
Yes that’s a remote control you see as well. We’ll get to live the parents dream and directly control how loud our child plays her music, mwuhahahaha!
Actually its kindof cool as these implants can connect straight into bluetooth and other wireless techs, i’m a little jealous. Maybe i should start getting some Advanced Bionics kickbacks from this free PR…
And of course last but not least, we’re the first kids on the block with a stuffed monkey with its own Cochlear Implant:
So Mom and Dad are learning besides Fiona, but she’s already acclimating quite well to the change. Kids are so resilient!
Fiona’s recovery continues to go well. Really well. In fact, the first day back from the hospital she was already crawling around the house like nothing happened.
Her spirits remain high and she’s in a super-cute inquisitive stage of late. She’s also crawling EVERYWHERE. Here’s a picture from just a few minutes ago.
Activation is still on track for next Thursday. Oh boy are we looking forward to it.
To get everyone in the mood, here’s a short activation video from “Ava” from last year. Not sure how old Ava is, but he looks pretty young!
7 days to go!
Ran across this great 12 minute audio podcast this morning from Physics Central describing the basic operation of Cochlear Implants as well as the new MIT research I blogged about two weeks ago on the Internal Cochlear Implants. It also delves into the wireless power charging and research around how sound location can be determined with newer CIs. Very interesting stuff.
What I particularly liked about this podcast is how they explained technically complex ideas in basic, easy to follow lay terms. A great way to understand the basic physics of CIs without requiring an advanced degree. If you’re still not totally clear about how CIs work, give this explanation a try.
In other news, we’re continuing to appeal the CI surgery denial from Blue Cross I blogged about earlier this week. No news yet, but we’ve received incredible support and are continuing discussions. Hopefully we’ll hear more soon. (no pun intended)
And now for a gratuitous Fiona picture. This is Fiona in front of a giant redwood from our recent vacation last month. Pretty amazing.
Well we finally heard back from the insurance company, and the news is not good. Blue Cross declined approval for Fiona’s surgery on March 7th on the grounds of her being too young for the procedure. We feared this might be an issue.
Recall, the FDA approval for implants is 12 months, but Fiona will only be 10 months old at the time of the surgery. As such, we anticipated this may be a problem, but our doctor has assured us he has safely and successfully implanted many children at 10 months old (as have many other doctors around the world). Early implantation is critical to mainstream language development of children as the infant brain establishes key neural pathways around sound and speech as early as 10 months old. Every month you delay puts the child further behind.
Here’s the exact language of the denial:
Still there is hope. BCBS has an expedited appeals process the allows our doctor to speak straight to their medical board. Our doctor has agreed to do this, so we’re crossing our fingers on a breakthrough there.
If this doesn’t work out, it’s not the end of the world. Note the second to last sentence in the response above:
Please note, member meets policy criteria for coverage at age 12 months or older.
So we do want to put things in perspective: she has approval, we’d just have to wait a little longer. As parents we want to give her every advantage as early as possible, provided it is safe to do so. Still, we’re not ready to grab the pitch forks quite yet.
We’ll keep you posted on the appeals process, but for now the March 7th date is off.
Stay tuned for updates…
Back in July I posted about The Future of Hearing Correction, in which I mentioned a logical next step would be a totally implantable Cochlear Implant. Well it looks like recent research from MIT has made another step forward towards this dream.
In this recently published article, researchers at MIT’s Microsystems Technology Lab created a CI processor that can theoretically operate entirely internal to the ear.
Existing CI processors, while smaller now then ever, are still bulky and worn externally in quite a noticeable manner.
While it could be argued this is pure vanity and it shouldn’t matter if the processor is visible, I tend to be a realist and think the presence of CI hardware could lead to discrimination and exclusion in some social circumstances. Especially for children.
The internal processor is an interesting and natural evolution of the technology. Its amazing to me to think that through technological innovation, a child born deaf could interact with hearing peers in a manner that those peers would never know that child was deaf. We’re not there yet, but I can see this happening within Fiona’s lifetime.
This research is currently just that, research. As far as I’m aware, this new processor has not yet been implanted into a live subject, and it looks like there are still some challenges to work out on the power side of things:
“The idea with this design is that you could use a phone, with an adaptor, to charge the cochlear implant, so you don’t have to be plugged in,” says Anantha Chandrakasan, the Joseph F. and Nancy P. Keithley Professor of Electrical Engineering and corresponding author on the new paper. “Or you could imagine a smart pillow, so you charge overnight, and the next day, it just functions.”
A “smart pillow” gives me the willies – something about running electrical induction so close to the brain, but I have to assume smarter people then myself have this all figured out.
Still, exciting to see progress move forward so quickly.
I managed to miss this during the Super Bowl yesterday (must have been grabbing a beer…), but Microsoft aired a cool commercial that showed the Cochlear Implant activation of a grown woman. Check it out at around the 0:47 mark of this video.
Pretty moving to say the least.
She was actually featured on the Ellen show originally in this longer video, check it out:
While Fiona’s activation likely won’t be as dramatic, we’re still very anxious to see the result on… (see next blog post).
Today we bundled up Fiona in her winter parka (courtesy of Aunt “RoRo”) to brave the 15 degree weather to visit her ENT (Ear Nose Throat) doctor. Today’s checkup was a routine step on her long journey towards her upcoming Cochlear Implant surgery on March 7th.
The nurse practitioner checked out Fiona’s ears for infection and fluid, but everything looked great. Right now infection is her biggest risk of postponing the surgery date, and babies under 1 year can be prone to frequent ear infection. Fortunately with Eliza being a stay at home mom, we are avoiding the most common source of infection: day care.
In the 2-3 weeks before the surgery Fiona will be entering our “baby in a bubble” phase, meaning we will need to limit her exposure to the elements, other people and most importantly other children. We are even considering using a mask to cover her mouth during hospital visits, but that may be extreme.
Fiona has a pre-op checkup in mid-February, then a CAT scan in late February to confirm her ear passages are still clear for the surgery. If all proceeds well on that front, we’ll be set for the March 7th surgery on her first ear.
We’re very excited and can’t wait to share the activation day with everyone.
2013 was a tough year for Team Isham. Fiona Kate was born on May 1st, just over 7 months ago. On May 2nd, she failed her newborn hearing screening. Two retests later, our fears were confirmed: Fiona was profoundly deaf. Eliza and I were devastated.
On June 9th I started this blog, now knowing much what to expect. Eliza and myself can sometimes be private people, but we just didn’t know how to cope. It was too much, and we needed to talk to people. The blog seemed the right balance to me – share info with those who wanted to follow, without depressing those who didn’t. I thought maybe 10 people would follow.
The response was, in one word, astounding.
Its almost become cliche to say “we have a great family”, “we have great friends”. Everyone does these days it seems, but in our case it really is true. The amount of support we’ve received has been mind boggling. We didn’t know what to expect, but I’ll tell you this wasn’t it. We expected a few cards and some polite “i’m sorry to hear that”, but that was it. How wrong we were – the continued involvement and response to this blog has been heartening and empowering.
Even today, over 6 months later, we continue to receive complements, support, and encouragement. And boy have we come a long way. If you get a moment, reread that first blog. Its a strange time warp for me. We have come so long in such a short amount of time.
It still sucks and we’ll probably never stop saying “what if”, but we’re in a much better place now. It’s not so bad, we got this.
2014 will be a much better year. Fiona’s first Cochlear Implant surgery is March 7th, just over 2 months away. Her activation will be a few weeks after that. This will be the first sound she will ever hear – ALL BEFORE HER FIRST BIRTHDAY!
Eliza and I thank everyone for sharing this journey and being, well…awesome. It means more to us then you’ll ever know. Hopefully this blog has been uplifting and maybe you learn a thing or two along the way.
Fiona’s journey is far from done. Thanks for sticking it out…
Great article found by the head of my research division (aka Eliza), it’s about Dr. William House, the creator of the Cochlear Implant:
I love stories like this: entrepreneurs who “buck the trend” to bring something meaningful to the world. It’s interesting to hear some of the opposition he originally faced, like this quote:
The responses from fellow doctors, however, stung. They claimed he was money hungry, House said.
Working for technology startups the large majority of my career, i’ve been fortunate to work with some pretty creative and intelligent people working on creating something new the world has never seen. Still, never have I worked in medical research – this is an area that really makes a difference. I often wonder what my life would have been like if I went down that path instead.
The article mentions a memoir of Dr. House, The Struggles of a Medical Innovator: Cochlear Implants and Other Ear Surgeries: A Memoir by William F. House, D.D.S., M.D.
Might be a good book to add to my Christmas reading list. If anyone has already read this (or adds it to their own list), I’d love to hear your reactions.