Wednesday, July 2, 2008

To Implant or Not To Implant a Child Who Has Never Been Amplified


Do you or do you not give the okay for a cochlear implant to a child over age 7 who has never been exposed to any form of amplification? Good question. My answer: NO. I spoke to an audiologist at the Gala Dinner of the NHS 2008 Conference and her answer was a resounding "Maybe." The gentleman sitting next to me, who worked for Advanced Bionics agreed with me.

We were discussing the case of a fourteen year old boy who really wanted a cochlear implant. He had excellent speechreading skills and signed, but had never worn hearing aids. His parents and this child, who really wanted a ci, approached this audiologist. Their reasoning for requesting the ci was not because they believed it would be an "instant fix," rather, the boy wanted to be exposed to sound. He wanted to know the "sound of sound." He wanted to be aware of background noise in the street, in restaurants: he wanted to "hear" music.

The audiologist assured me that the parents were provided with reasonable expectations, resources were provided and they were told again and again that their son would not acquire speech as he had never had access to the spoken word prior to the ci. I asked her if the parents had been given the contact information of other parents who had lived the same experience. She said, "No."

The parents told the audiologist again and again that they did not expect their child to speak...they were not expecting a "miracle."

I looked at the audiologist skeptically. Implanting a child who has never heard at age 14 will only be a delusion for that child and the family. That family, no matter how many pamphlets or how many doctors tell them that child will not speak...HOPES that their child will speak or they would NEVER go ahead with implantation on a fourteen year old Deaf child who signs.

The child received a cochlear implant.

Apparently, although the child is unable to decipher sentences and cannot speak, the child says that the ci assists him in speechreading and provides him with a certain tranquility with regard to environmental cues.

And the parents...???
They would like to know why their child still isn't speaking.

25 comments:

Native ASL/CI parent and child said...

My answer is same as yours: I wouldn't recommend that.

The child would end up throwing the CI in the trash. Implanting later in age without consistent prior amlification of any sort is a bad idea.

AL said...

I think its up to the parents and child, as long as they're fully informed of the possible results and risks. I've known teenagers who decided to get a CI and they're happy with it even though they receive very limited benefit from it.

Anonymous said...

Same here, and our challenge still lies:

How can we effectively communicate to the parents that their 'expectations' are unrealistic, and how can we help the parents to embrace the child's unique differences?

It happens a lot. Research done by CDC in 2006 indicate that approximately 46 percent of infants who were referred for audiological evaluation did not follow up or not having a formal documentation of their hearing loss.

Therefore, the time is lost on this child.

Because of what reason?

I can speculate few things:

1. Economic reasons (insurance coverage for audiological evaluation, or transportation to the clinic?)

2. Shock? Denial? Grief processes is not been followed up?

3. Lack of resources in that area?

4. Fear of unknown?

Then with this lack of follow up,the child will lag with their language development by age of 3 to 5, and its harder when a child enrolls in school.

Then by that time, get implanted between 5 to 7 years old, would that help?

I don't think so.

Maybe parents are afraid with the concept of implanting 6 month old infant? This procedure does have some risks, no matter benefits may outweights risks.

It is very costly. Not many parents have health insurance, and it becomes an unfair advantage.

EXCEPT...

if these parents are able to follow up with that for whatever reason.

I pray hard that these parents are willing to take a free class on Baby Signs for their child. That is what American Sign Language can be used for the first few years as a 'safety-net' in case if this child cannot get an implant for whatever reasons.

Can we agree to see this way? Sign language? ASL (or other country's sign language) is not a dirty word anymore. It is a research-based valuable approach . Not an alternative, it is a viable approach too.

Best,
Amy Cohen Efron

Anonymous said...

Amy, wouldn't all the factors you mentioned as being a barrier to follow-up on a failed infant hearing screening *also* affect a family's willingness to learn baby signs to communicate with their child? (except that learning baby signs does not require surgery, thank goodness!)

That's why I stressed in an earlier comment to Jodi that parents need to be led to resources about hearing loss and language *immediately* upon the discovery that their newborn is deaf. Hopefully, the resources will encompass both the oracy components and the ASL/cultural components so that no family is left without full information to make educated decisions in their particular child's best interest.

K.L. said...

Jodi,
I fully agree with your post. A late implanted teen will get very little benefit. The parents need to be connected to other parents of a similar situation. Parents of newly identified infants have to have a safety net. If they don't follow up, someone should contact them and find out why. And other parents who have been through it should be part of the follow-up.

Anonymous said...

Yes, the chances are that the child will receive very little benefit, BUT, there are some kids who defy all odds. My son received his first CI at age 6, he was an ASL kid in a bibi school at the time as HA's gave him zero benefit. At his pre-implant testing, his oral language score was 9 months of age, 2 yrs later, his oral language score was 10 yrs and 9 months, (he was 8). Last year, he received his second implant. I had been encouraging him to consider it for a while, but he didn't show any interest until last year, he was 14. At that age, the average 14 yr old who has been deaf in that ear from birth without appropriate amplification, understands about 16% of speech one year post hook-up. My son understood 78% at his 3 week check-up, and 98% of sentences at his 3 month check-up. Yes, very unusual, but not un-heard of. Is it then up to us to say, with full assurity, that every child of 14 will NOT benefit from an implant?

I believe that every child has some potential and we really don't know what it is.

Irish Mom in CO

mother of CI boys said...

I've met a couple of adults who received CIs in their teens. I think the key to their enjoyment and success was that they were previously orally educated, so they could expand upon their lipreading and oral skills to continue with their implants. However, I agree that it really depends upon the situation. In general, those choices are easier in the first few years of life.

But in my opinion, by age 14, it's mostly up to the child. It's up to the parent to make sure that the child has all the appropriate information and realistic expectations, but they cannot force nor can they completely deny the desires of the child. They may end up being dependent upon insurance or the surgeon's recommendations, in reality, but the child needs to feel that they are the most important facet in the decision. And they need to agree that if the expense, surgery and work involved take place, they won't "throw it in the trash" as another person suggested. They will have to work to get used to hearing (and know that it might be bothersome at first, as they get used to it)!

Don't underestimate the importance of environmental sound... even without speech benefit, there are lots of reasons that a CI could be helpful. It could even be lifesaving in certain instances.

No doubt the research shows that, after 7, the P1 latencies will be unlikely to change much, if at all. And it's a shame when kids want to hear and essentially "missed the boat." But there should be no set rules in this kind of case, only recommendations. Perhaps eventually the ability to assist in neural growth via genes or medication will allow late implantees the same benefits as early implantees. Now that would be cool!

Rachel said...

I have to say that my views differ on this one. I'd say that it depends on the parental involvement and the deaf people's willingness to be involved with the rehabilitation. If the parents are willing to work with the children to help them to learn to hear and/or the deaf person is willing to be involved with the rehabilitation, then I'd say there are no issues implanting the child. Just as long as there are REASONABLE expectations. I have a friend who was DEAF as she could be until she was SIX years old when she was implanted. She did intensive auditory-verbal therapy from six until 15 years old and is doing very well for someone who was implanted at the age of six. She can understand about 75 percent of the speech. I have another friend was born profoundly deaf and did not receive a CI until she was 11. She's doing very well too for someone who was not implanted at the age of 11. She can understand about 75 percent of the time too. I could go on and on with more stories like this. I even know a few who received their CIs as late as 25 or even 40. Of course for the ones who were deaf as they could be throughout their life and didn't receive a CI until their 20's or later, they don't really get any speech comprehension, but they can HEAR the SOUNDS, and they enjoy having that. So, as I said, it really depends on the parental involvement, deaf people's willingness to be involved with the rehabilitation, AND their understanding of having reasonable expectations.

Concerning the 14 year-old child who has excellent speechreading skills, his outcomes with his CI are very normal for someone who was implanted that late. I'd say the fact that it helps with his speechreading is VERY GOOD outcome for someone who was implanted at the age of 14. It's really better than nothing! Of course, it seems that the parents didn't have the reasonable expectation, and THAT's the critical part that people need to understand.

So, I wouldn't say NO to ALL deaf people. I would say that it depends on EACH INDIVIDUAL deaf person.

K.L. said...

The key would be "reasonable expectations". As long as the person being implanted, and their parents if appropriate, understand the amount of time and effort that will be involved, and what the general outcomes have been in the past with other people of similar situations, the implant would be up to them. What I hate to see is a late implanted person who is then disappointed because it doesn't work as well as they expected it to work.

Anne Marie said...

Very interesting. Thinking of myself as 14 years old, I believe I would have been able to make my own rational decision with parents' and experts' discretion.

I would most likely not bother to go through invasive surgery with greater possibility of only hearing sounds when high ended aids may do good to enjoy music.

Funny I was really looking forward to the new bill passed here in Colorado to require insurance coverage for aids but only to learn that it is for up to age 18 : \ because I would have gotten aids myself to enjoy Mozart while driving.

Thanks for this great blog.

Anonymous said...

The kid only wanted to hear sounds but the parent had other expectations?

Well, this one story I know personally since I know this person well. He was 35 years old when he decided to get implanted. He came from a family that consists of several generations of deaf people. His reasoning was, he only wanted to hear sounds. He had no intention of going for AVT and has no expectation to be able to speak fluently. He is currently happy with his implant.

I guess, as long as the implantee understands the expectation of certain possible outcome, all is good.

Candy~

Jodi Cutler Del Dottore said...

I agree with this...something needs to be done:
How can we effectively communicate to the parents that their 'expectations' are unrealistic, and how can we help the parents to embrace the child's unique differences?

and this:
That's why I stressed in an earlier comment to Jodi that parents need to be led to resources about hearing loss and language *immediately* upon the discovery that their newborn is deaf. Hopefully, the resources will encompass both the oracy components and the ASL/cultural components so that no family is left without full information to make educated decisions in their particular child's best interest.

...everything that K.L. said (as usual)

Irish Mom's situation is the exception to the rule, but who are we to say that there will not be many exceptions to the rule? It's a difficult issue, the key is that the parents and "child" receive all resources possible so as not to have false expectations.

Rachel's points were well taken and well expressed.
The kicker for me was that the parents of this child thought a miracle would occur despite having been forewarned - they needed to have access to other parents, this is a vital missing link.

Thank you to everyone for such thought-provoking comments. Jodi

Lane said...

After being tone deaf for 32 years with hearing aids not helping at all. I went for CI out of curiousity.

At an appointment with my ENT doctor, my mom told him she and my dad first considered getting me CI when I was around 14 years old but didn't go for it....she asked him if there would be any beneficial difference between me getting CI at age 14 and at 32...he said no not very much. (yes my parents came with me to several appointments...they begged me to include them)

If I had it at age 14 I may be little more familiar with sounds but at age 32 I have a newer model. Cool.

Back to the point, I don't pick up any words or sentences at all as expected....just the environment sounds so I agree it's more beneficial if getting CI'ed before age 7. (some say 5)

dog food said...

yeah, that's exactly why i'm seeing many of my friends getting implants; just to hear the sound of sounds. I'm always curious if anyone could just buckle down and train themselves hardcore, would they pick something up?

Since there are stories of fatties getting up off their rear and doing some serious commitment and shedding 450 lbs in a couple years as well as accident victims who end up walking even if the doctor said its impossible; i wonder to what extent does an implant may make. The mind is surprisingly malleable if the desire to bend it is strong and consistent enough.

I'll still keep on hunting for a better hearing aid and try to get an implant. It should be fun for me to see what my limits may be. I'm proud of that kid for trying any access he can get and flourish within his own means.

Val said...

If my kid came to me as a teen and wanted a ci, I'd help them invistigate (for months, and months or years/whatever it took) 'til I found someone who's worn those shoes before. I would have to agree w/Rachel, if the kid's 14 I would say let them have some sound if they want it and if they will put forth the effort it takes to learn to hear. I mean they are only 14 and still have their whole life ahead of them. Teens are at that awkward age, figuring out what they really want, and what they don't want. So I would definitely say it's not a parent's choice there, it would be the teen's, requiring parental consent of course. Turn the tables and ask what if the teen had fully investigated, wanted this more than anything, and the parents refused permission?
and to answer Amy's question, my answer would have been reasons 2,3,and 4. If that doctor at our hospital where Gage was born, had not told me that "babies w/malformed ears on the outside, usually have problems on the inside of the ears as well" I would not have taken him until much later for a follow up. Why? Denial, yes! mainly because the nurses came directly in to assure me that lots of babies go on to pass the follow up tests, it was downplayed big time...didn't seem like a concern to them. Lack of resources...I was handed a special needs baby with a syndrome that wasn't correctly named until age six, w/no papers, no information when I left that hospital. Shouldn't I have been given a number for early intervention? and fear of the unknown...What the heck did I know about special needs, hearing loss, or even a baby? I was 26 years old, and this was my first child. I didn't know anything, I'd never heard of a baby with hearing aids. so as you can see, it would be a combination.

Anonymous said...

Leah of Signing Time fame got her CI when she was around 8. Her speech has improved dramatically and she wears it all the time, which makes me think it must be helping her some in that regard. She's around 10 or 11 now I think. She may have worn hearing aids before though -

Jodi Cutler Del Dottore said...

Hey Lane!!! Thanks for posting your experience, greatly appreciated.
Dog Food, that was nice of you to say that to Lane...interesting comment.
Val...live for you *smile*

Hiya Candy:)
Thanks for your comment, Anne Marie...Jodi

Lane said...

I read your post again, I get the whole picture now...I have a bad habit of reading too fast. My apology.

Like this parent in your post, I've met one late CI adult that already said "it doesnt work" and I had to be like, in what way? ended up to be just same level as mine....I say it's a success for me, she says it's a failure....she even thought her speech will improve.

She may have been misinformed somehow before going for the surgery.

Now in one paragraph you said "the parents told the audiologist again and again....." is it supposed to be "the audiologist told parents..."?

Jodi Cutler Del Dottore said...

Lane...This: Now in one paragraph you said "the parents told the audiologist again and again....." is it supposed to be "the audiologist told parents..."?
is an issue.
Can the audiologists be flexible or should there be a cut-off? Based on the comments here, there can't be a "cut-off" because each case needs to be treated on an individual basis. If one wants to hear the "sound of sound" how can an audiologist deny that possibility? Or since the technology exists, is that enough of a reason to provide it to those who request it? Like Val said, how can a parent argue with a 14 year old who insists on wanting to hear sound? Dunno. Jodi

Melissa said...

One of my initial thoughts after reading this was to wonder about these parents. Why did they never get the child hearing aids or a CI? Years ago, it was more the norm for deaf children not to hear well, but today it is, and so more and more kids are reaching their teenage years and learning about CIs and seeing kids who got them early and are asking their parents why they didn't take that path for them. This is not the first time I've heard a story like this recently.

I think that it was irresponsible of these parents to make an irrevocable decision for this child. Regardless of whether or not they chose to sign with the child from the start, they should have gotten him hearing aids or a CI as well so that he would have access to sound and spoken language and had the ability to make his own communication choices. Now, at 14, he is asking for a chance to at least get what he can at his age. It sounds as if he had reasonable expectations and that the CI is meeting those expectations. Who knows? Over time, he may continue to improve.

Again, though, I question the parents wanting to know why he isn't speaking. What kind of research have these parents done? Whom have they spoken to? Their decisions along the way seem to have been made out of ignorance, and thus, to me, they've been irresponsible when it comes to looking out for their child's welfare.

Melissa said...

One addition to my comment - Economic status is not an excuse for poor parenting. When Rachel's deafness was diagnosed, my husband was in training earning next to nothing, and I was working part-time with a large portion of my salary going to pay for daycare. That didn't stop me from gathering information and from seeking out other parents. I first found a program that cost $100 a year, and even that wasn't charged if the parents couldn't afford it. When we switched to AVT when Rachel was 16 months old, we got scholarships and paid what we could.

There are programs and scholarships to help parents, but it takes persistence, determination and even creativity.

K.L. said...

Hi Dog Food,
You make an important point. Yes, the brain can keep making adjustments. And if the brain has gotten any use out of hearing aids, it will be easier. If a person worked VERY hard, they would make more improvements than usual. Determination can take you a long ways. However, all we can look at for recommendations would be statistics on how people have done in the past.

Like Lane said, expectation is a large part of determining if an implant is a success or failure. Generalities are about the best that can be done at this time, and that can be very frustrating.

Hey Jodi, I live for you too!

Shel90 said...

Melissa,

You are doing what u accused the Deaf community is doing...by criticizing the parents for not giving their child hearing aids or CI when he was younger. If you dont want criticism for your decision, then you should extend the same respect to other parents. We dont know the full story of why the child didnt get hearing aids or a CI when he was younger so please do not make assumptions like saying they are irresponsible.

Respect is a two way street. You ask for it for your decisions, then you extend it to parents who didnt choose the same path as you did.

Melissa said...

Shel,

Read the last line of Jodi's post:

"And the parents...???
They would like to know why their child still isn't speaking."

This is what caused me to write what I did. If the child could have realistic expectations, why not the parents? That they had their child implanted and didn't take the time to comprehend what it would do for him says a lot about them and reinforces the impression I got when I read about their earlier choices.

There is too much blaming the system these days and too much shifting of responsibility to the schools. When we choose to have children, we must be prepared to take on what we get. Not to access the information that is so readily available today is irresponsible.

Abbie said...

I want to inject a comment because of what I saw at this past convention. I had the opportunity to meet many people that have been deaf all their lives and decided to get a CI. Many of them were simply curious to see what makes a sound, they communicated through ASL and they did not speak. I came upon this couple who has never heard a single sound, but they decided together that they were going to get a CI. And they did, together, same day surgery.

Mind you this is just one of many "Lanes" that I met but I was drawn to this particular couple. They reminded me of the couple in "Hear and Now." I latched onto them and asked them what made them decide to get a CI after being unable to hear for the past sixty years. They told me they just wanted to hear sound. Their expectations were very low because the doctors and audiologist stressed that the benefit to someone who has never been amplified is low. They were put through psychiatric session to prepare themselves. They forged ahead not expecting miracles.

They still cannot speak but they are happy with what they can hear. Is that a benefit? Absolutely! I asked them whether the technology was around when they were younger, would they have gotten the CI knowing that the benefit would have been just the same?

They said yes but they might have not stuck with it because of the transition period of learning how to hear.

It has been said that you can never measure the success of someone else's cochlear implant journey because it is personal, but they were happy with the benefit that they did get.

They represented the grown up versions of the 14 year olds that you are talking about. They were placed in a setting where they were "mentally prepared" with a psychiatrist on what to expect. If this same technique could be used on parents to mentally prepare them on the limited expectations, I would say yes. If this type of support structure were not implemented, I would say let the child make his own decision when of age.