The Expanding World of Sigrid Cerf Cochlear Implant Pioneer Advocates for Adult Aural Rehabilitation Features
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Features  |   July 01, 2010
The Expanding World of Sigrid Cerf
Author Notes
  • Susan Boswell, assistant managing editor of The ASHA Leader, can be reached at sboswell@asha.org.
    Susan Boswell, assistant managing editor of The ASHA Leader, can be reached at sboswell@asha.org.×
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Hearing Aids, Cochlear Implants & Assistive Technology / Audiologic / Aural Rehabilitation / Features
Features   |   July 01, 2010
The Expanding World of Sigrid Cerf
The ASHA Leader, July 2010, Vol. 15, 4-6. doi:10.1044/leader.FTR5.15082010.4
The ASHA Leader, July 2010, Vol. 15, 4-6. doi:10.1044/leader.FTR5.15082010.4
Sigrid Cerf was vaulted into a new world when she received a cochlear implant (CI) after 50 years of deafness. Her world expanded to include long telephone calls and effortless conversations with her two grown sons and her husband, Vinton Cerf, considered a “father of the Internet” and renowned for his role in the development of e-mail and other communication tools that particularly benefit people with hearing loss.
After receiving her first cochlear implant in 1996 and a second implant in her other ear nearly a decade later, Cerf honed her listening skills by listening to 500 audiobooks. She also makes use of assistive listening devices to maximize her ability to hear in challenging environments.
A longtime advocate on behalf of people with hearing loss, Cerf has served on the boards of Auditory-Verbal International and the Alexander Graham Bell Association for the Deaf and Hard of Hearing, where she observed parallels between the aural habilitation needed by children who receive a CI and the rehabilitation needed by adults. A year ago, the Cerfs met with ASHA to advocate for an increase in the number of speech-language pathologists providing aural rehabilitation services for adults with cochlear implants, services that would increase their ability to understand speech with the CI and to utlize assistive technology to its full extent. They also expressed a need to advocate for reimbursement to cover these services. In the following interview, Sigrid Cerf shares her success with cochlear implantation and offers insights about how professionals can work with clients and patients to help them use available technologies.
Q: Tell us about your experiences growing up with hearing loss.
After spinal meningitis at age 3, I had a 90-dB bilateral loss that progressed to a 100-dB loss by age 32. The right ear was unused from age 3 as it was determined that I couldn’t benefit from a hearing aid in that ear. My mother and I attended a summer session at the John Tracy Clinic, which had recently been established in Los Angeles, to learn how to retain my speech and listening skills. Although well-intentioned, my family subtly discouraged talking about the hearing loss. My parents would whisper to people who noticed I wasn’t paying attention: “Sigrid’s a little hard of hearing, but we don’t discuss this around her.” If we all had been more upfront about the hearing loss in those days when there was more of a stigma attached, I suspect I could have learned to deal more easily with it. Being married to Vint, who’s also challenged by—and successfully deals with—hearing loss, I've learned to share with others what’s needed for good communication.
Q: What was it like to go from a hearing aid to a cochlear implant?
The left ear, which benefitted from a hearing aid, was implanted in April 1996. The transition seemed phenomenal. My husband and I talked by phone before I left the clinic. That week we headed to what’s called “the best party on the planet,” the Napa Valley Wine Auction, with hundreds of party-goers. The party hasn't stopped. Six weeks later, I evolved into a big fan of the phone and audiobooks. I spent evenings chatting with telemarketers, many with accents. I chose audiobooks that were based on my favorite reads and avoided reading the text along with the audio version.
Q: Why did you decide to get a second cochlear implant?
In 2005 I decided there wasn't any reason to wait any longer for newer CI technology for my right ear, which had had no auditory stimulation for 60 years. The outcome was again extraordinary and unexpected: within eight hours of activation, I was hearing, but not necessarily understanding, some of my son’s conversation across the kitchen as he ran the garbage disposal. Moments later, we discovered that I could hear conversation from another room and use the phone. The sound seemed vague and distant at first, but I was understanding speech. In 2008, tests of word understanding in quiet indicated I understood 65% with binaural hearing, but only 60% with the primary ear. I was lucky to have had the benefit of normal hearing until age 3, and I’m astonished at how well I could function after so many years.
Q: You did aural rehabilitation activities after your cochlear implant. What types of AR do you think CI recipients should receive?
CI users need to be aware of technology that can give them better access to sound when used with their CIs and hearing aids. Unfortunately, many have not been encouraged to use this technology. Adults need instruction on how to use technology, including sound processor options; cables and coils and how to connect with assistive listening devices; and the various cell phone compatibility ratings. This training should occur over a period of time after initial activation, when users are less overwhelmed. I see some CI users missing what can be easily accessed. Some rarely use the phone and don't even know how to switch to a T-coil program that’s mapped into their equipment.
Aural rehabilitation should be an integral part of CI intervention for adults, just as children receive auditory habilitation. There appears to be minimal aural rehabilitation for adults, and it is often available only on request. Every adult should be evaluated for this, and an individual program should be developed. It should now be easier for audiologists and SLPs in private practice or in clinics without a medical director to provide these services under Medicare in spite of the remaining issues of poor reimbursement, but greater advocacy is needed. Some adults can benefit from structured auditory practice. A partner-enhanced focus on listening that parallels the auditory-verbal training children receive also can enable some adults to maximize their listening skills and rely less on former speechreading habits.
Q: Do you have any suggestions for new CI users?
New CI recipients should request aural rehabilitation, because it’s not automatically suggested by the audiologist, SLP, or physician. They should get as much auditory stimulation throughout the day as they can handle. I suggest listening to audiobooks based on favorite reads, rather than children’s books, which can seem like homework. They should be encouraged to carve out time each day to explore what they most enjoy hearing and turn the activity into a hobby. This could be listening to clear audio from their TV, radio, MP3 player, or laptop. For example, by turning off television captions and concentrating on the audio whenever it is sufficient, recipients can maximize their listening opportunities and refrain from speechreading habits.
Q: What types of hearing assistive technology do you use and when do you use it?
I’m an assertive user of assistive technology because my desire to hear every single word—everywhere—means that I must overcome the single barrier faced by those who use cochlear implants and hearing aid technology, which is listening in noise. When I was fitted with my original body-worn processor, I received an auxiliary microphone, a cable that could be plugged into my processor. The visible presence of this cable tells people that what they have to say is important to me. I also use FM and infrared systems when there’s a greater distance between the speaker and me. It is more challenging to connect the newer behind-the-ear processors to an assistive listening device because more than one cable is involved.
Group Aural Rehabilitation Services

A group aural rehabilitation program for adult cochlear implant recipients at the Heuser Hearing Institute in Louisville, Ky., is demonstrating some interesting results.

In the program, which was tested and refined this year, adults met for two hours each week for five weeks. Each session was organized around specific topics, such as the importance of rehabilitation, use of the sound processor and accessories with hearing assistive technology, use of the telephone, resources for listening practice, and communication strategies. Spouses were encouraged to attend and CI recipients were encouraged to schedule individual intervention in between the group sessions.

Clinicians found that although some participants were initially skeptical about the need for aural rehabilitation, this attitude changed over the course of the program as participants realized they benefitted from content presented by professionals and interaction with other recipients. The program was developed jointly by the Heuser Hearing Institute and Cochlear Americas. For more information, contact Donna Sorkin, vice president of consumer affairs, at dsorkin@cochlear.com.

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July 2010
Volume 15, Issue 8