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Professor’s Unique Records Of Tongueless Woman Leads To New Medical Understanding

Published: May 2, 2011

We usually don’t give much thought to our tongue. It quietly goes about its essential job of helping us swallow, taste, speak and lick our lips, unless we use it to let out a whistle.

But it can be life challenging for people who lose all or part of their tongue to disease or injury, or very rarely are born with little or no tongue at all. Now, a long-overlooked case of a woman born without a tongue — a condition called congenital aglossia — is revealing new insights that can benefit tongue-impaired individuals.

Betty McMicken, an assistant professor of communicative disorders at CSULB, recently rediscovered an old film along with video and audio tapes of the woman, whom McMicken examined privately in the mid-1980s and refers to as Carol for patient privacy. The nationally recognized speech therapist was retired as a professor and chair of the Communicative Disorders Department at Cal State L.A. before coming to CSULB. One of her private clients is actor Kirk Douglas, whose speech was impaired by a 1996 stroke.

McMicken co-founded Newport Language and Speech Center in Orange County and was seeing clients at Western Medical Center when Carol’s mother brought the then-16-year old for advice on whether cosmetic surgery to move the girl’s small jaw forward would affect her speech. “I looked into her mouth and there was no tongue, and yet I’d been talking to her for a good 15 minutes and there was literally nothing I couldn’t understand. She sounded a little like she had a cold, but other than that, she seemed very clear,” McMicken recalled.

“I did a standard articulation evaluation on Carol and said that I would be getting back with some information for her and her mother. In the meantime, I had been working on a head and neck team at Western Medical Center in Santa Ana for about six or seven years. It consisted of five head and neck surgeons, and at the time, they were performing tongue resections and reconstructions for head and neck cancers. It often involved removal of the jaw and the complete tongue, and reconstruction with material from other parts of the body.”

The team was very interested in this rare case and took a variety of high-quality audio and videotapes of Carol speaking. “The physicians wanted to do cineradiographic studies, which are X-ray studies of her speaking in real time to see what structures she was using to realize her amazing speech,” McMicken said.

They discovered that since infancy, Carol had learned to use two muscles in the floor of her mouth and move her lower jaw in a way that strengthened the muscles, enabling her to speak and swallow, so cosmetic surgery would impair these functions.

“We as a team looked at these cineradiographic studies of vowels, consonants and connective speech over and over again and we kept saying, ‘We can help our head and neck patients by what we’re learning from this. We can place the pseudo-tongue in a more functional location better in the oral cavity. We can assist our patients with greater mandibular (jaw) movement, which was what she was showing us. We can perform much improved reconstructions through the information we are learning from Carol.’ And we did,” McMicken explained. “At the time, which was around 1986 and 1987, we completely revised the anatomical shape and placement of pseudo-tongue and pseudo-mandible based on what this woman was able to do. We achieved much-improved results and she helped us tremendously in assisting our head and neck patients with speech and swallowing.”

Carol and her family decided to forego further treatment, so her film and tapes sat largely forgotten on McMicken’s shelves for more than 25 years. Then a couple of years ago, a classroom video that included a cineradiographic study of a normal speaker reminded McMicken of the old study, so she decided it would be the perfect basis for new research and began delving into past aglossia studies. “Since 1718, there have been only 10 cases reported in the literature of isolated congenital aglossia,” she explained, since many children don’t survive because they can’t properly eat.

Realizing that she needed help in evaluating Carol’s materials, McMicken gathered a new research team including Khalil Iskarous at the Haskins Laboratories at Yale University, which specializes in the science of speech and language; and Shelley Von Berg of California State University, Chico, an authority on craniofacial anomalies.

“As it turns out after reading all the literature, I’m the only one in the world that has the extensive data. There are no other reported examples internationally of cineradiographic studies of congenital aglossia,” McMicken said. “Because no one had done anything from a scientific perspective, we decided to do a perceptual, acoustic and physiological analysis. We would begin with the perceptual, meaning that we have videotapes of samples of her speech, so we would have 20 individuals listen to segments of these tapes and repeat/write down what they heard.”

Initially, McMicken was concerned about damaging the original film and tapes, so she went to two professional media production firms in Burbank to have them converted to TIFF and JPEG filtered and processed files—an expensive but necessary task to preserve their quality.

For the team’s first study, Von Berg had a group of Cal State Chico students and faculty listen to audio DVDs to determine how well they could understand Carol speaking vowels and the acoustic characteristics of those sounds. That study has been submitted to the Cleft Palate Journal and the researchers have given several presentations at professional speech and language conferences.

“Our next effort will be on whether the listener can perceive correctly her production of single words and to study acoustically the characteristics of how they are produced. Our last paper will be on the cineradiographic analysis, which should be absolutely fascinating,” McMicken said.

One of their goals is to aid speech and language professionals’ understanding of the science in teaching tongue-reconstructed clients to better speak and swallow. Although modern tongue reconstruction techniques offer better outcomes nowadays, patients often still have problems with eating and speaking, McMicken explained. “The more we understand the basics of speech production with an abnormal mechanism, the better our rationales for treatment.”

McMicken has tried to reconnect with Carol but can’t find her, and old medical records were purged long ago. Nevertheless, “The bottom line is that this material is teaching us how an aberrant structure can produce intelligible speech,” she said. “Therapeutically, Carol made a difference in 1987 with reconstruction of our head and neck patients and our understanding of how speech is produced by an abnormal structure. But today, our understanding of how she produces accurate, intelligible speech in many ways will have a profound effect on the theory of speech production. It’s incredibly exciting. There’s so much that we can learn from her.”