McMicken, Rogers Have A Reunion To Talk AboutPublished: October 1, 2012
When Betty McMicken met Kelly Rogers for the first time 26 years ago, she was amazed at just how clearly she spoke.
“I had received a phone call from her mother when Kelly was 16 and she asked if I would evaluate her daughter who had congenital aglossia,” said McMicken, an associate professor of communicative disorders at CSULB. “I wrote down the diagnosis because it was something I had never investigated. We made an appointment and then I researched the diagnosis and found congenital aglossia was the term applied to someone born without a tongue.” Naturally, McMicken was intrigued.
McMicken, who co-founded Newport Language and Speech Center in Orange County, was seeing clients at a hospital where she first met Rogers.“I had no idea what to expect and I walked into the waiting room and said, ‘Is Kelly Rogers here?’ and an attractive young lady said, ‘I’m Kelly Rogers, are you Betty McMicken?’ I thought my hearing must be really bad and I must have misunderstood what her mother told me. Her speech was excellent.
“I brought her into my office and we chatted,” continued McMicken, a nationally-recognized speech pathologist, “I didn’t ask her anything about her particular pathology; I just listened to her and I kept saying to myself she couldn’t have congenital aglossia. I looked in her mouth and I almost fell over—there was no tongue.”
The main reason for Rogers coming to see McMicken, however, was not to help with her speech— amazingly, that was quite intelligible. Rather, she was inquiring about the potential of a mandibular adjustment, surgery to realign her small lower jaw.
“The question was, if we did a mandibular advancement, would it change her speech and swallowing?” said McMicken. “We completed many x-ray studies and decided if we changed the alignment in Kelly’s jaw, we would impair the structures she uses for such remarkable speech.” So there was no surgery. “I think something that is really important to note is that Kelly has never felt that her speech or swallowing ability was a problem.”
“It was much more a cosmetic issue for me,” added Rogers.
From birth until the time she first met McMicken, Rogers had received very little therapy, but an early diagnosis given to Rogers’ parents was not encouraging.
“My parents were told when I was really young and before I started talking that I wouldn’t be able to talk or that there were sounds I wouldn’t be able to make,” said Rogers. “I’m not a parent, but I can imagine how that must have been really difficult to hear. They were thrilled when I was able to tell the same doctors all the names of the animals I had recently seen at the zoo. They would say ‘Tell her what you saw at the zoo,’ and I’d say ‘Hippopotamus.’ According to my mom, one of the doctors almost fell out of her chair.
“I remember seeing a speech therapist when I started preschool, maybe even before that,” she continued. “I remember my mom telling me later on that I saw him so they could get me to speak up more. I think that when I started attending school I met a lot of kids who said, ‘Oh, you talk funny’ so maybe I became quieter. I didn’t realize that I was any different than anybody else until then.”
Rogers now clearly realizes she is different, and remarkably so. She is one of just 11 individuals reported in medical literature to be diagnosed with isolated congenital aglossia since 1718 and according to a recent literature search is one of only a few living today. Another is an 18-year-old woman in Brazil.
McMicken looked at Rogers, “We should go see her; wouldn’t that be fun?”
McMicken has been in touch with Dr. Frederico Salles, who reported in 2008 on the Brazilian woman, and he has invited the CSULB pair to come for a visit and meet with his patient (who is now in nursing school) and the members of his medical team. McMicken will lecture the staff on her experience and she and Rogers will share their mutual experiences and knowledge on this very rare occurrence. The visit will take place in January of next year.
The fact that McMicken and Rogers are able to go anywhere together is a miracle of sorts. Three years ago, McMicken was looking at classroom video that included a cineradiographic study of a normal speaker and it reminded her of what she had—the films and tapes of Rogers, which had sat largely forgotten on shelves for more than 23 years following the Rogers’ family decision to forego any further treatment.
“I thought, ‘Wait a minute, I have some cineradiographic films and video of someone who doesn’t have a tongue. I think I’d better look for them because now I have to do research in order to be tenured and promoted,’” she said. “I found everything and thank God I saved this invaluable data. I started looking at it and was literally bowled over. I thought, ‘Oh my gosh, she can teach us so much.’” The woman in McMicken’s tapes was, of course, Rogers, but the two lost touch back in 1986.
“The last time I remember seeing Kelly and her mom was in a medical building parking lot after about 10 physicians had examined her,” said McMicken. “They were very brusque in their treatment of her and her uniqueness. Everybody had to look and feel and poke and then tell her they could do nothing to improve her jaw alignment. I did not expect her to be treated like that.”
“Up until then, I had never experienced anything like that,” added Rogers.
When McMicken and a colleague from the medical center walked Rogers and her mother out to the parking lot, both mother and daughter were crying.
“It absolutely broke my heart to see them like that,” said McMicken. “Not so much the news they were given, but the way it had been presented. I have had nightmares about that night and I think one of the reasons it took me so long to drag out her films is that I was really heartbroken over what had happened.”
“I really don’t remember hearing the diagnosis about my jaw that particular day, but I remember hearing it right after I graduated from high school,” said Rogers. “The doctor I was seeing who was supposed to do reconstructive surgery—that was the goal we all had in mind—said ‘I really wish I could help you, but I just don’t feel comfortable doing the surgery.’ He was concerned it would greatly affect my ability to speak and he wasn’t comfortable about that possibility. It was a very difficult thing to hear.”
When McMicken tried to contact Rogers after rediscovering the tapes and films of her, she had no luck. “I began to research the data on Kelly and I started looking for her on Google. I’m not on Facebook, so I had other people who are help me, but there are a lot of Kelly Rogers,” she joked. “I looked at the literature and there were 10 cases, before I published my first paper, of isolated congenital aglossia. It was so unusual, so rare, that I thought somebody must have found her over the years, but I couldn’t find anything, so I had really given up hope of ever locating her.”
A July 2011 article in the Long Beach Press-Telegram featuring McMicken and her work on this specific case changed all that, though that change wasn’t immediate. Nearly a year after the article was published, a high school friend of Rogers Googled congenital aglossia and discovered the article that described, but did not name Rogers.
Shortly thereafter, McMicken got an unexpected e-mail.
“I got an e-mail from Kelly’s friend’” said McMicken. “It said ‘Kelly Rogers’ in the subject line and I’m telling you my heart jumped and I felt as if I was on a rollercoaster. I opened the e-mail and she said ‘I read the article in the Press-Telegram from a year ago and that is a woman I went to high school with. I’m in touch with her now and the woman you called Carol (in the article) is Kelly Rogers and she’s 42.’ It was almost like my father coming back to life, it was that emotional to me; I had tears rolling down my face.”
“I have to say when I got the message on Facebook from my friend about Betty and the article I was not what I would call ‘happy’ mainly because the article featured a picture of the inside of my mouth,” said Rogers. “It just felt very strange. I don’t let people look in my mouth. I think it took the whole next day for me to process and I talked to a close friend and she encouraged me to contact Betty.”
McMicken, of course, wrote back and, before she knew it, was on the phone talking with Rogers.
“When I heard her voice on the phone, it was like having my mom or dad, who had passed away, come back into my life because she is so much a part of my brain,” said an emotional McMicken. “I am so familiar with her—the way she talks, all the nuances of her speech, the way she looks. I’m so familiar with everything, and I thought there was no hope of ever finding her, but I’m so glad I did.” To add a touch of irony to the story, the two actually lived near one another, McMicken in Lake Forest and Rogers in neighboring Mission Viejo.
McMicken invited Rogers to campus and the following day they met for the first time in more than a quarter of a century.
“I would have known her anywhere because she still had that 16-year-old face that I know so well and I know her voice so well,” she said. “Kelly has been so much in my mind and in my ear because I’ve listened to the tapes thousands of times and looked at her wonderful 16-year-old face thousands of times in the last three years.”
McMicken pointed out that, unbeknownst to Rogers, her case from 26 years ago has indirectly helped a great number of individuals over the years.
“I was working on a head-and-neck team back then and we improved reconstruction based on what Kelly taught us,” said McMicken, “and that was with just one paper and a little investigation back in 1987, but nothing like what I am doing now. I think Kelly is just beginning to understand the fact that what she does with her speech and swallowing can help so many people.”
“I had no idea,” admitted Rogers. “That was the first thing I told Betty the first time we spoke on the phone; I had no idea that the way I speak and swallow was something that would help other people. It’s only been a few weeks and I’m learning to embrace something I’ve always pushed to the back of my head. I wish I could go back and do things differently, but I’m doing it now.”
Rogers began community college right out of high school and though she liked school stopped attending after one semester to work full time. “I wanted to support myself,” she said. Today, at Saddleback College, she is a straight “A” student, but her life is now moving in a different direction. She had planned to come to CSULB and major in fashion merchandising, but through this miraculous reconnection and McMicken’s strong encouragement, she now plans to attend the university next fall as a communicative disorders major.
“She can help truly revolutionize the way we look at speech and swallowing because everything Kelly does is different and remarkable,” said McMicken. “She teaches us how to help patients. If I look in her mouth, I see nothing; looking in her mouth doesn’t give me any information other than there’s a structure that’s missing, but when she speaks or swallows, and what she does when there is movement is extraordinary. I likened it to someone seeing without eyes, someone hearing without ears or someone touching without fingers. Her speaking and swallowing without a tongue is equivalent to a miraculous event.”
McMicken thinks Rogers’ professional future is extremely bright and recently hired her part-time to be her personal research assistant, noting that “she has already been an enormous help to me.” The two are working on the second of McMicken’s published papers on Rogers and she will be listed as the second author.
“I think that Kelly and I, by forming a research partnership, by forming a teaching partnership can really affect millions,” said McMicken, who also indicated they will be presenting together at upcoming speech and hearing association conferences. “She is a poised, intelligent, effective communicator and is very goal-oriented. I’m always recruiting for speech pathology and Kelly would be spectacular. She can truly teach better than I can. It’s not just speech, it’s also swallowing because for her to be able eat in a normal fashion is nothing short of a miracle. She’s an inspiration, there is no question about that, and she has information that no one else has so what she can teach us is extraordinary.”