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.