Monday, March 13, 2017

What a cochlear implant is NOT, what it IS, WHY we chose to implant our daughter, and our expectations for Heidi


As mentioned previously, our youngest daughter, Heidi, was born deaf. She is almost 15 months old, and received bilateral cochlear implants last week. I first heard of cochlear implants (CI's) a few years ago, but really didn't understand what they were, how they were used, or what they can or cannot accomplish until recently. And even now, I only have a rudimentary knowledge as to the range of outcomes for CI's and some of the pros and cons. We're still novices at this!

But given how little I used to know about CI's and given that I receive many many questions from friends and family that reflect a similar basic gap in understanding, I thought I'd write out some info that can hopefully clear up many of the questions people have regarding Heidi. I don't mind questions and always appreciate people caring enough about Heidi's journey to ask questions. . . even if they are very basic questions or questions based on a misunderstanding. That's okay! And for my friends-and-also-professionals who read this, feel free to make any corrections on my explanations :-D.

First of all, what a cochlear implant is NOT. This honestly is a really important thing to understand. CI's are absolutely NOT a cure for deafness. When I first heard of cochlear implant surgery (we had a deaf neighbor when we lived in Texas, who had CI surgery around age 6) it was explained to me as a way to correct deafness and let someone hear. Um, no. No, no, no. This is not like repairing a torn ligament or even like something such as corrective eye surgery. Cochlear implant surgery does not fix deafness. And I'm not mincing words here, or trying to hold onto a label of "deafness" that I somehow don't want to let go.

So what IS a cochlear implant? Basically, CI surgery implants a device into a person's cochlea (in the inner ear) that allows the auditory nerve to be stimulated through electronic means, to bypass the usual sound pathway of ear canal, eardrum, middle ear bones, etc. For whatever reason, one of the main causes of deafness (by no means the only cause) is insufficient hair cells in the cochlea. These hair cells are extremely crucial to hearing and the stimulation of them through the usual means are exactly HOW a person hears. Without these hair cells (or other possible reasons why hearing is absent), sometimes a CI can be used to stimulate the cochlea in a mimicry way.

What was actually inserted into Heidi's head last week was two sets (one for each side) of electrode arrays that were slid into her cochleas and naturally coil up into the snail shell shape of a cochlea. Different pitches of sound in normal hearing stimulate different areas of this snail shell shape (and transmit this info to the auditory nerve, and in turn, the brain). In a similar way, with the technology of a CI, sound transmitted through an external microphone and processor then sends a signal to trigger electrodes along the inserted electrode array, which in turn stimulate the area of the cochlea corresponding to that sound.

In theory. Actually, it doesn't work out so perfectly in actuality. The sounds perceived by a CI recipient APPROXIMATE actual sounds, but can be "off" in pitch by quite a bit, which matters some in learning to listen and/or speak, and even more in learning to listen to music, as pitch is more important in musical settings. A CI recipient goes through gradual therapy over several months, that introduces the brain to more and more of a range of sounds, as the brain accustoms to sound and perception of sound. And even after initial auditory-verbal therapy, most CI recipients will need additional speech therapy to groom their speech.

Some CI recipients never develop enough sound discrimination to develop speech, while others are indistinguishable in speech from a "hearing" person. Some CI candidates are very accustomed to sound and speech, and prefer using sound v. choosing silence and signing. Other CI candidates find their strength in sign language, visual perception and expression, and other non-auditory methods of exploring, communicating with, and viewing the world, and either benefit from a CI in more general ways (awareness of environmental noises, but not speech) or don't benefit from CI's at all. More on the varied "success" of CI's later. . .

But back to what a CI is not. Remember that I said CI surgery is not a cure for deafness? One of the very real reasons it is not is because a CI does absolutely nothing unless the outer processor is attached (with working batteries). If the outer processor is not being worn, no electrodes are stimulating the cochlea, the auditory nerve is not being stimulated, and no hearing is taking place. In other words, the person is still deaf. Cochlear implants are battery operated devices that can be turned on and off at will.

Post-surgery, one of the most common questions I've gotten is if we've noticed Heidi responding to sound yet. We haven't yet, for the very simple reason that she hasn't even been given her outer processor yet. In order to not associate the new experience of sound with potential pain, the surgery site has to fully heal before she's given her initial sound stimulation in a few weeks. In addition to the electrode array, also implanted directly under her skin is a magnet that will be used to attach her external processor in place when she's using her CI's to access sound.

Even when she's "turned on" at the end of March, her processors are programmed very low, to only stimulate a select range of sounds. As the months progress, the idea is to slowly program her to receive more and more sound input, as she becomes accustomed to sound and as her brain learns to process sound. Remember, as far as we can tell, she has probably never heard anything, so this is all new stuff for her brain! I've met one mom with a deaf daughter who was implanted about a decade ago, and the mom told me that her daughter didn't even respond to sound at the initial stimulation, because the program was turned so low initially. So it'll be interesting to see if Heidi even visibly "notices" her initial program, or if that'll wait until future programs that add more to the spectrum.

Okay, so here's the million dollar question and the most controversial: why did we choose to implant Heidi? For many people we have met, the assumption was that OF COURSE we'd implant her, because why wouldn't we want to use this amazing technology, and for other people we've met, they've been very leary of the use of cochlear implants and counseled us against or counseled us to wait and let Heidi decide. Why or why not?

Well, I'll start off with saying I totally "get" why someone would choose either path. We wrestled with a lot of pros and cons, and while we felt confident in the end with wanting to explore cochlear implants for Heidi, we also understand the concerns with CI's and why others might choose other paths. Here is what it boiled down to for us:

On the con side, it really really gave us pause to consider allowing our child to go "under the knife" for a non-life-threatening reason. We didn't take this lightly. We know every surgical procedure has risks, and drilling into the skull (to be quite frank) certainly has some. So does having a permanently-implanted device in your body. We're okay with Heidi just the way she is. She doesn't NEED hearing, she can have a full life without it, and we believe that she could be just as content in her deafness as we are with it. Not just "okay" with deafness, but thrive with deafness.

Hearing loss is just that: a loss of hearing. Heidi's brain is fully functioning, she is in excellent health, and is poised to take on life to the fullest. As long as we pack language into her, she's fine. And we truly believe that. This is exactly why we've poured so much of our time and energy into sign language this past year, and why we will continue to make sign language part of our family culture and part of our means of communicating with Heidi.

The two major objections to CI's, especially to those in the Deaf community, as far as I can tell, revolve around concern with (1) neglect of sign language in order to focus on listening and speech and (2) perception of deafness as a "disability" that needs to be fixed.

As I already said, we don't plan to neglect sign language, as we simply don't know what Heidi's success with a cochlear implant will be. If a child is not given a full language by age 5, this language deprivation can have permanent repercussions on their mental and cognitive function, even if they're given language later. Because we don't know NOW if Heidi will have full access to language through a cochlear implant EVENTUALLY, we don't want to wait and wait and then find out after she's already language-deprived that she needed sign language and that we should have been learning it sooner.

To address the more controversial topic of deafness as a disability, one must understand that a culturally Deaf person not only is fine with their Deafness, but is happy they're Deaf, and offended by terms such as "hearing disabled." This is why I use the term deaf to describe Heidi, because it simply isn't an offensive term. It's a perfectly acceptable label. A person who is culturally Deaf doesn't need or want pity, and is quite happy in a soundless world. For hearing parents to have the chutzpah to "fix" their deaf child without consulting the child is potentially offensive to many who consider themselves "capital D" culturally Deaf.

From the beginning of our journey with Heidi's deafness, I've sought to be very sensitive to the Deaf community, Deaf beliefs, and a Deaf perspective on what Heidi needs, listening to the voices of the Deaf community as well as medical professionals. I think both worlds have much to offer us, as hearing parents of a deaf child. I absolutely will not tolerate comments to this post that mock the Deaf community or Deaf beliefs. Period. I find their language beautiful and their love of who they are AS they are (rather than a discontent in who they are not) to be inspiring and comforting.

But that being said, yes, I consider hearing to be the normal way that God created man to communicate, and we believe God's promise in the Bible that He came to make the deaf man hear and the lame man leap for joy. Deafness is not a blessing to us (except in so much that we believe that God redeems everything for Himself and brings good for His people out of all circumstances), it is not something we sought, it is not something we would pray for in another child. But we would welcome another child who is deaf! And we wouldn't choose to prevent more biological children if we discovered Heidi's deafness is genetic. Our deaf child is a blessing! However we also do not have an objection to adding sound to our deaf child's world, if we think it could give her advantages.

And to address a side issue, why did we choose to implant Heidi NOW, v. waiting until she's older and letting her choose that herself? The biggest recommendation I've heard from the Deaf community is not to NEVER implant Heidi, but instead to wait until she's a bit older (anywhere from elementary age or older) and let HER decide if she wants to experience sound. This is her world, her body, and her experience. Let her decide.

And we considered that. But ultimately it boiled down to, for us, a realization that either way - whether we chose to implant her now or waited and let her decide - we already were deciding a major decision for her. We had to choose whether or not to give her that chance for sound access during her most crucial period of language development. She doesn't NEED that sound access, to be clear, but we did have to make the choice either way, to give it or to decline the option.

Getting a cochlear implant at age 7 or age 10 or adulthood - especially for someone like Heidi who is prelingually deaf - is simply NOT the same experience as for someone who is a baby or toddler. There are crucial developmental windows for developing speech that would be missed. Yes, a CI recipient who receives one later can often still get some use out of a CI, but not in the same way that an earlier recipient would. The longer the human brain does not have access to sound, the more the brain rewires itself (how cool is that?) and is "taken over" by the other senses, to compensate. If we waited until Heidi was older and let her decide, she would not have the option to go back and recapture that crucial developmental window for speech and language.

We do NOT believe that a family who doesn't choose early implantation is "depriving" their deaf child of sound or speech. Absolutely not. They are simply choosing a different emphasis and a different option for their child. But we also do not believe that by choosing implantation for Heidi, we are "depriving" her of her deafness. Our intentions, rather, are to give her the fullest opportunity to experience both the hearing and deaf worlds. In order to truly experience the closest that she can to the hearing world, she can best do that by early access to sound stimulation. Should she choose at an older age to "turn off" sound, she can simply stop wearing her outer processor. We would totally support that decision at an appropriate age. Yet another reason to have a sign language base of communication!

We live in a hearing world, and we live in an English-speaking world. And like most deaf children, Heidi was born into a hearing family. If possible, and according to Heidi's abilities, we feel that it will benefit Heidi over time to have tools that allow her to access both the hearing/spoken aspect of our family culture and especially (since the outside world cannot adapt in the same way our family can) to access spoken language and sound in the outside world.

Having access to sound, even electronic stimulated sound - and potentially having access to speech -might allow Heidi to be a much more independent communicator than if her main method of communication was sign language. This in no way is disparaging the use of sign language, either as A means of communication or the ONLY means of communication for her. This is simply recognizing that while living, communicating, and working in modern-day America, not having need of a sign language interpreter to go about daily business can be a huge asset to a deaf individual.

If Heidi was born into a fluently-signing deaf family, this would be completely different. Her language access would be complete and accessible from day one, and her family culture and her built-in close community of friends would already have her language and her culture. (Talking through walls and talking while doing eye-intensive tasks is a major part of our family habits! That's been really difficult to slowly adapt! We are a "hearing culture" family, for sure!)

But Heidi wasn't born into a fluent signing family. And her family, while trying to learn sign, will not be fluent anytime soon! If we choose a signing-only environment for Heidi, realistically she will have limited communication with most of our acquaintances, friends, and family. Yes, we plan to seek out deaf friends in the Deaf community, but we also have a very large foot in the hearing world. We and she don't NEED her to be part of our hearing world, but we'd like her to have as many ways as possible to feel that she belongs in our family and our world in every way. This means developing sign language so that we can communicate with her effectively, but it also means considering ways that we can include her in our inevitable hearing activities, as her ability allows.

There are SO many factors that affect the "success" of a CI, including if a person is deafened pre- or post-lingually, if they have multiple-challenges rather than "just deafness," if they receive adequate follow-up therapy, if they get appropriate language input, if their auditory nerve is fully-functioning, etc. And honestly, there are just a lot of mysteries and questions in medical research as to how to best predict the success of a cochlear implant, for the purpose of accessing sound and developing speech. It might work, it might not.

Our general expectation for Heidi is that she will soar. In her time, in her way. We expect LANGUAGE for her, not because language is automatic, but because it is so essential. We don't know what else to expect, and we're not sure what form that language will take - spoken, signed, written. . . some combination?

Honestly, this is really new ground for us. With our other 3 kids, they became extremely fluent talkers at a young age with ginormous vocabularies simply because their mother never shuts up, tele-commentates EVERYTHING to her babies, and because they were blessed with no communication barriers. With Heidi, language will take a lot more purposeful input than just her mother constantly talking. Factors like background noise, effectiveness of her CI's, therapy, how quickly her family learns sign language and how faithfully they sign with her and around her (it has to be in her field of vision!). . . so much more at play and so much more one-on-one attention needed!

We honestly don't know what to expect as far as what communication mode will work best for her, both short-term and long-term. We've been told by well-meaning people that she will definitely prefer sign language over sound and speech, and that might be what happens. We're okay with that! We've also been told by equally-well-meaning people that she will likely prefer sound and speech, because for most children implanted at her age, it comes easier for them than sign language. That might be true. We're okay with that!

We do not expect that she will be a fluent English speaker, though we are poised for that possibility and it is in the realm of realistic results. We also do not expect she will choose sign language as her primary means of communication, but we are okay if she does, and are working towards greater sign language fluency. We expect God's grace in the craziness and His direction each step of the way. We expect we'll make a lot of mistakes, learn a lot, pray a lot. We expect our whole family will continue to learn a lot and grow a lot through this whole process. And our prayer is that Heidi will thrive and learn to effectively communicate with us, with others, and with her Creator. That's quite enough for us. Anything else is icing on the cake.


5 comments:

Amy said...

Beautiful, Susan and Adrian. Thank you for sharing your hearts, your thought process and your sweet family with us. Much love to you all.

Sandra said...

Such a wonderful explanation. Thank you for sharing your family's personal journey. I will be praying for God to continue to bless you all.

Emily said...

Was wondering if you and Adrian are going to encourage Heidi to learn to read lips as well as sign?

Susan said...

Emily, we wouldn't encourage reading lips as a primary means of communication, just because lip-reading only gives less than 50% of the information (at a generous estimate!), and isn't really a full way to communicate. But that being said, I think lip-reading can be a useful addition, both for CI use or signing, sort of in the way you suggested :-). Pure ASL doesn't use mouthing in the same way that a "hearing" person mouths and signs often simultaneously - a spoken-English person can't seem to stop mouthing while signing. There ARE standard mouthings in some ASL contexts, but not all the time, for every word. But we also recognize that while we're studying ASL, which doesn't use mouthing in the same way spoken English does, because our primary language is English, the signing we'll use will have more of an "English" flavor to it. (You can google PSE to see sort of what I mean. We might also utilize aspects of SEE for some of Heidi's education. We're still open to ideas and seeing what "works" best for Heidi and us.) I think using cues from lip-reading might be helpful in the future for Heidi, as she learns to listen with her CI's, and I'd definitely encourage that as part of a whole approach. I don't know enough about lip-reading to know how or if that would need to be strategically focused on to get much use out of it. Currently, I wouldn't plan on lip-reading training being a huge part of her therapy, though I'm not in objection to using it as one tool of many, for her to use to communicate.

Emily said...
This comment has been removed by the author.