Video of deaf woman goes viral: Is that good or too good to be true?

By David H. Kirkwood

By now, many of you must know about Sarah Churman. She is the 29-year-old Texas woman who virtually overnight has become the most famous hearing healthcare patient in the world. But in case you’re not one of the 5.3 million plus people who have viewed her YouTube video and if you haven’t come across any of the countless media stories about her, including one on Monday evening’s O’Reilly Factor or watched her being interviewed on the October 3 Today Show, I’ll fill you in.

On September 27, the wife and mother of two young daughters had her recently implanted Envoy Medical Esteem, a middle ear hearing system, activated for the first time. Her husband, Sloan, videotaped the event, at his mother’s suggestion. She posted the video, entitled “29 years old and hearing myself for the 1st time!,” on YouTube and it went viral

It’s not hard to see why it caught on. It’s about as heartwarming a 90 seconds as you’ll ever see on the Internet. When the technician turns on the Esteem and asks Mrs. Churman if she notices the difference, the patient nods, then bursts into uncontrollable tears of joy. For the rest of the video, she is alternately crying and laughing so hard that she can barely get a word out, except at one point to exclaim, “My laughter sounds so loud!”

As the attractive young woman holds her hands over her face and dries her tears with a tissue, the moment seems totally genuine and unscripted. It’s no wonder that NBC, Fox News, and various other networks have rushed to put her on the air.

In her appearance on the Today Show, she seemed equally believable as she told host Matt Lauer and NBC’s chief medical editor, Nancy Snyderman, MD, how she had been born deaf, and, despite wearing hearing aids from an early age, had never been able to hear her own voice until getting her implant.

 

SOME NAGGING DOUBTS

Despite being touched by the happy event in this young woman’s life, there were a few things about the story that seemed implausible to me. Maybe it’s because after 35 years as a journalist, I have a rather over-developed degree of skepticism. It’s an occupational hazard.

But my experience covering the hearing industry also contributed to my nagging doubts. Earlier this year, I researched and wrote an article on middle ear implants for ENT Today. Among the devices I discussed was the Esteem, which the FDA approved in March 2010 for patients with “moderate to severe sensorineural hearing loss.”

In a response this week to the Churman video, Envoy Medical defined candidacy for the Esteem somewhat more broadly, saying that the technology “is designed for people with moderate to severe (40-90 dB and in some cases greater) sensorineural hearing loss  who have some residual hearing.” But that still falls short of saying that deaf people are candidates for the Esteem.

So, among the questions that occurred to me were:

• If Sarah Churman was born and remains truly deaf, why was she implanted with a device designed for people with residual hearing?

• How, if she had never heard her own voice, did Mrs. Churman develop speech that, to my ear, sounded totally unaffected by her hearing loss? (That’s a question she is often asked. She has replied, “I’ve worked very hard to be able to interact and blend in. The only thing I can say is ‘God is good.’”)

• And if, as she says, the hearing aids she had worn since she was a little girl allowed her to hear some sound, why had she never heard her own voice?

 

ADVICE FROM COLLEAGUES

One of the great things about being with hearinghealthmatters.org is that I can consult with colleagues who, unlike me, are experts on the treatment of hearing loss. I did so in this case and found that some of them shared my skepticism.

But one of my fellow editors, Dr. Wayne Staab, sent me a response that I found particularly insightful. I would like to share part of with you.

Wayne, who is editor of the Wayne’s World blog at Hearinghealthmatters.org, pointed out that people outside the hearing care field often use terms more loosely than audiologists do. For example, he said:

“Patients often refer to their hearing loss as deafness, even though it isn’t, by definition. [Patients] who have heard their voices for the first time without the occlusion effect will often say that this is the first time they have heard themselves ‘normally,’ which could be what this is referring to. I have seen people cry when this happens.

“And, it is not uncommon for them to exaggerate, even though unintentionally, because they are hearing something different and are excited about it.

Wayne added: “I found out a long time ago that it is important to listen to the patient, even when we don’t believe or understand fully what is happening. To them, something is happening that is different, and which we may later find to have legitimacy.  I know for certain that this is what happened with the first cochlear implants.  Most laughed at Dr. John House—then.”

As for Sarah Churman, he commented: “She may be more emotional than someone else, but that happens. The procedure may have turned out better than she had anticipated. Will all patients react this way? I suspect not, just as all of your patients do not cry when you fit them properly (and even in some cases improperly) with traditional amplification.”

 

IT’S GOOD PUBLICITY—BUT IS IT TOO GOOD?

Please understand, I am not suggesting that Mrs. Churman is being in the least bit dishonest. I suspect Wayne Staab’s speculation about her case is on the mark.

Nor does it seem that she was seeking the attention that has, in fact, come her way. Blogging a few days after the video came out, she expresses amazement at the response. She explains that she posted it on YouTube partly for her friends to see. In addition, she wanted to draw public attention to the Esteem and to make the point that “insurance companies need to start covering this procedure!” Those are surely good reasons to share her happy story.

However, I still have distinctly mixed feelings about the video and the enormous visibility it has gained. Certainly it’s good to see positive publicity about hearing care. And, while Envoy Medical stands to gain the most from this story, I expect there will be some spillover effect on other middle ear implants and on hearing care in general.

So, what’s my problem with this story? To put it simply, I believe it sends a misleading message. Taken at face value, the video suggests that with an Esteem someone who was born deaf and has never been able to hear his or her own voice will suddenly hear and, what’s more, speak as clearly as someone without a hearing loss. Yes, miracles do happen—but rarely. And it would be a shame if viewers of this video who are deaf or have a loved one who is were led to expect a miracle.

That’s not a far-fetched fear. Already, Gael Hannan, a prominent advocate for people with hearing loss and editor of our Better Hearing Consumer blog, has heard from a woman who lost her hearing 10 years ago due to a benign tumor removal. She asked Gael where she can get an Esteem.

In closing, I would love to hear from readers what you feel about this story.  Watch the videos and then attach your comments.

 

OCTOBER 6 UPDATE

Much has happened since the preceding blog was posted on October 4. Sarah Churman appeared on The Ellen DeGeneres Show, where Ellen announced that Envoy Medical, maker of the Esteem, would pay for her other middle ear implant. In addition, the show’s host presented her with a $30,000 check from Envoy so she could pay back her mother-in-law, who financed the first implant.

Meanwhile, more than 6.4 million people have visited Sarah’s YouTube video. 


7 Comments

  1. My question is would envoy esteem work for someone with severe-to-profound hearing loss? (She said she have severe-to-profound hearing loss somewhere, I believe on her under youtube comments) I know that hearing aids can hurt the eardrums if it too loud (I know blasting speakers do rather I can hear it or not) and it seem that envoy ease that stress so it can make the device more powerful.

    I am sorry, but I don’t think she was misleading. She worked very hard at Mystery young as at the age 2 . There’s always a rare case and she is one of them.

  2. To expand upon the point Wayne Staab raised about how patients can use different terms; and also how they hear their own voices, take a look at this video of Lori Frisher in NYC, who also had her Esteem implant switched on back in November:

    http://www.youtube.com/watch?v=43D3G2OHCsk

    We can infer that Frishers’ progressive hearing loss is also in the profound range, as she has a (failed) CI in her right ear…

    Dan Schwartz,
    Editor, The Hearing Blog
    Follow The Hearing Blog on Facebook

  3. David, your article seems like a fair balance of information, but your omission of one key piece of data causes me to question your motive:

    The Esteem system is only available with a Doctor’s prescription.
    People will not be receiving this device unless it is a good fit for them.

    It is very common for people to want to temper the “naive excitement” of others so that those that get excited will not be disappointed. You know, the parental encouragement to be rational. I think we’ve all done it. In making major decisions, it is important to be objective and even to be aware of the worst case possible outcomes. I believe that your article David is a call in this direction. But then with that understanding, it is my belief that people should dive head long towards their dreams. I expect that some people may read your article and decide to not take action. You will never know how many there were, but if you did, would you count them as victories? I suspect not. I believe that you would rather have people get excited about this, and decide it’s time to do something about their hearing loss. Even if they find that Esteem is not a fit for them, wouldn’t you rather they get up and do SOMETHING to make things better for themselves?

    Clearly, the Esteem is a remarkable device. It’s not for everyone. Watching a number of the testimonials on Envoy’s website: http://www.envoymedical.com/hear-from-esteem-recipients
    really does give you the sense that these kinds of results are not unique to Sarah Churman.

    And even if the Esteem is not appropriate for someone, it is ALWAYS exciting to see a person taking action. Cochlear Implant manufacturers, Hearing Aid Manufacturers, Audiologists, and most importantly PEOPLE WITH HEARING LOSS can absolutely get excited about this! Find out what is out there, find out what the options are, and with the help of a Hearing Professional, make the decision that is best for you.

  4. David,

    This message you call misleading is posted on Facebook by a recipient of an implant that happened to work vey well for her. She is not a professional in the hearing industry. She is not an employee of Envoy Medical Corporation, and she did it out of wanting to share her experience. Why can’t media people just let it go as a good thing for the hearing industry. Over analyzing this type of event robs the story of the potential good it can do for the hearing industry. Speaking of misleading stories, the hearing industry and their labeling and claims for hearing advances over the years has been nothing short of false claims or do you remember the “hearing in noise” claim that the FDA came down on a number of years back? What ever good can come from this episode please let it happen and stop your nit-picking. People who need help will contact hearing professionals and they will be given the correct information as to whether or not they qualify for this type of implant. Don’t fret David everything will be alright!

  5. David,
    I have been asked the questions similarl;y that you have of the speech and her success. Also, I do agree that the term “deaf” can be used rather liberally in various communicators. I have felt that this video and the terms used, may have equally sent a mixed message of something “to good to be true”. However, in thinkng positivily and with an optimistic slant, it may seek those that have been given weak chances of hearing success, a drive to pursue help.

  6. Great article, David. I concur with your observations and agree that Wayne is most likely correct about the reasons for her reactions. I saw similar reactions over and over again while in practice. However, I too was somewhat skeptical as well. Most troubling was her near perfect speech. She was on Ellen this morning and when I listented carefully, I did detect what I believe is a slight impairment.

    The key, for me at least, is that people don’t come away from her experience with UNreasonable expections for their own hearing solutions.

    As an aside, the Ellen Show contacted Envoy and they have said that they not only with take care of her other ear at no charge, but they are also refunding the $30,000 for the first procedure.

    She was right, God is good!

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