I Can Hear You Whisper Read online

  Although the entire device is called a cochlear implant, only part of it is actually implanted, the internal piece that receives instructions from the processor and stimulates the electrodes that surgeons place in the inner ear. On its own, that piece does nothing. Like a dormant seed that needs water and sunlight to germinate, it waits for a signal. Producing that signal is the job of the external piece, which contains the microphones, battery pack, and most of the electronics. This outer piece has evolved from a bulky body-worn case to—in its smallest iteration—a behind-the-ear device not much bigger than a hearing aid. The intention was always to keep the internal components as simple as possible so that technology upgrades could be kept to the outside.

  Alex and I sat down with the audiologists we’d been assigned, Lisa Goldin and Sabrina Vitulano. They had a big box from Cochlear waiting for us with the external parts of the implant nestled inside in thick black protective foam. Because Alex was young and his ears were small, we were going to start by keeping the battery pack and processor in a separate unit, about the size of a small cigarette case, in a cloth pocket that pinned to his shirt. A cable would run from there to the much smaller piece on his ear, and a second cable would lead to the plastic coil and magnet on his head. When he got bigger, we would be able to switch to a battery pack that attached to the behind-the-ear processor and would do away with the pocket and extra cable. Lisa started by attaching Alex’s processor to her computer directly with an external cable. She then hooked the microphone behind his ear, though it hadn’t yet been turned on, and placed the magnetic coil on his head.

  “You try,” she said, removing the coil and handing it to me.

  Tentatively, I held the little piece of round flesh-colored plastic above his right ear. As soon as my hand drew near the internal magnet under his skin, the coil fell silently but energetically into position. How odd.

  A snail-shaped outline appeared on Lisa’s screen, a representation of Alex’s cochlea and the electrodes that now snaked through it. Lisa clicked her mouse and a line of dots flashed on, one by one, along the curled inside of the snail. Each electrode was meant to line up with a physical spot in Alex’s ear along the basilar membrane, so the electrodes were assigned different frequencies with high pitches at the base of the cochlea and low ones at the apex. The farther the electrodes are inserted, which depends on the patient’s physiology and the surgeon’s skill, the wider the range of frequencies that patient should hear.

  “It’s working,” Lisa said. She had sent a signal to the internal components and they were functioning properly.

  Next, Lisa pulled up a screen that showed each of the twenty-two electrodes that had been implanted inside Alex’s cochlea in bar graph form. Two additional electrodes outside the cochlea would serve as grounds, creating a return path for the current. Lisa was going to set limits to the stimulation each electrode would receive—in effect, she was deciding how wide his window of sound should be. The process was known as MAPping, for Measurable Auditory Percept, and this was to be the first of many such sessions. At the bottom was the threshold, or T-level, the least amount of electrical stimulation that Alex could hear, and at the top was an upper limit known as the C-level, for “comfort” or “clinical,” which would equal the loudest sound Alex could tolerate.

  I stared at the computer screen, where each electrode showed up as a long, thin, gray rectangle. The sweet spot, the window of sound between the threshold and comfort levels, was depicted in canary yellow. Lisa could expand or compress the signal by clicking on the T or C level. Right there, in those narrow strips, was all the auditory experience of the world Alex was going to get in this ear.

  We all looked at him. His eyes had widened.

  “Can you hear that?” Lisa asked.

  He nodded tentatively. Since Bill House’s film of the young deaf woman Karen receiving her cochlear implant in the 1970s, there have been lots of videos of implant activations. YouTube has more than 37,000. Of the many I’ve seen, a few stand out. One ten-year-old girl burst into happy tears and clung to her grandmother, who, through her own tears, kept saying, “We did it, baby.” A baby boy, lying in his mother’s arms and sucking a pacifier, suddenly stared at his mother’s face. His mouth dropped open in amazement, and the pacifier fell out.

  Alex stayed true to his quiet, watchful nature. He stared at Lisa and then at me; his expression carried hints of surprise and uncertainty, but nothing more. The only drama was in my gut, tense with anxiety and hope. “It’s working,” I repeated to myself. Anticlimactic was okay, as long as it was working.

  Because he was hooked up to the computer, I couldn’t hear what Alex was hearing—he was having a private electronic conversation of clicks and tones. But he was responding. Sabrina had stacked toys on the table and was holding a basket. Just as in the sound booth, Alex was encouraged to throw a toy into the basket each time he heard anything. Kids, especially young ones, don’t always report the softest sounds, so there’s some art to assessing their responses. Once Lisa had set the levels to her satisfaction, she activated the microphone. Spinning her desk chair to face Alex, she ran through some spoken language testing, beginning with a series of consonants known as the Ling sounds. Developed by speech pathologist Daniel Ling, this is a test using six phonemes that encompass most of the necessary range of frequencies for understanding speech. Therapists, teachers, and parents use them as a quick gauge of how well a child is hearing.

  “Mmmm.” Lisa began with the low-frequency “m” sound, without which it’s difficult to speak with normal rhythm or without vowel errors.

  “Mmmm,” Alex repeated. He had done this test many times at Clarke by this point.

  “Oo,” she said.

  “Oo.” He repeated the low-frequency vowel sound.

  Then Lisa moved through progressively higher-frequency sounds. “Ee” has low-and high-frequency information. “Ah” is right in the middle of the speech spectrum. “Sh” is moderately high.

  “Sss,” she hissed finally. The very high-frequency “s” had been particularly hard for Alex to hear.

  “Sss,” he said quietly.

  “It’s working,” she said again. “See how he responds over the next few days, and if he seems uncomfortable, let me know.”

  I put the fancy white Cochlear box, as big as a briefcase and complete with a handle, in the bottom of Alex’s stroller. It contained a multitude of technological marvels: spare cables of various sizes, microphone covers, monitor earphones for me to check the equipment myself, cables for connecting to electronics, boxes of high-powered batteries. I thought back to my moment of ineptitude standing on the sidewalk in Brooklyn with Alex’s brand-new, tangled hearing aids. That had been nine months earlier, and it was amateur hour compared to this.

  “It will take a while,” was the last thing Lisa told me as Alex and I left her office.

  “It will take a while,” Dr. Parisier had said when we saw us after the surgery. “His brain has to learn to make sense of what it’s hearing.”

  Parisier had told us to use only the cochlear implant without the hearing aid in the other ear for a few weeks while Alex adjusted. But before too long, he wanted us to put the hearing aid back in the left ear.

  “The more sound the better,” said Parisier.

  “Won’t the two sides sound different?” I asked.

  “They will,” he said. “But he is two years old. I think his brain will be able to adjust. He will make sense of what we give him, and it will be normal for him.”

  When I reported Dr. Parisier’s instructions about the hearing aid to Alex’s teachers at Clarke, I realized just what unfamiliar territory we were in.

  “He said that?” said one, a note of incredulity in her tone. “No one does that.”

  “They don’t?”

  She was not quite right, it turned out, but when I investigated, I could understand why she said it. Very few people were using both a hearing aid and a cochlear implant at that time. One reason was that in the e
arly years, you had to be profoundly deaf in both ears to qualify for a cochlear implant. Most people who were eligible didn’t have enough hearing in the other ear to get any benefit from a hearing aid. By 2006, when Alex began using his implant, that line of eligibility was shifting slightly. In the next few years, “bimodal” hearing—electrical in one ear, acoustic in the other—would become increasingly common and a major area of research. But I suspect Dr. Parisier’s instructions for Alex were based more on instinct than science.

  Sitting in the office at Clarke that morning, I realized that even though children had been receiving cochlear implants for more than fifteen years by then, Alex was still on the cutting edge of science. He did have more hearing in his left ear than was usual, at least for the moment. As long as that was true, it made sense to try to get the most out of that ear. But what would the world sound like to him?

  We tried to damp down our expectations, but we didn’t have to wait long to see results. On the day after Lisa turned on the implant, I was playing with the boys before bedtime. We had lined up their stuffed animals and were pretending to have a party.

  “Would you like some cake?” I asked a big brown bear.

  “Cake!” said Alex, clear as a bell. The “k” sounds in cake contain a lot of high frequencies. He had never actually spoken them before. Even Matty, at four, knew something important had just happened.

  “He said ‘cake’!” he exclaimed.

  The following day, as I drove Alex up FDR Drive along the east side of Manhattan to Clarke, I let him watch Blue’s Clues on our minivan’s video system. “Mailbox!” I heard him call out in response to the prompt from the show’s host. I spun around to look at him and narrowly avoided sideswiping a yellow cab.

  “What did you say?!” He pointed at the screen and repeated “mailbox,” though it sounded more like “may-bos.” Of course, the show was designed to prompt him to say “mailbox.” Jake and Matthew had done that. But Alex never had, despite watching that same Blue’s Clues video many, many times.

  Two months later, he was able to tell me about playing cars with Max and Aidan complete with the “k” sound in “cars.”

  We had years of work ahead of us. Just keeping the processor on the head of an active two-year-old was a challenge. But something was fundamentally different.

  15

  A PERFECT STORM

  At first, doctors thought eighteen-month-old Caitlin Parton had the flu. When they finally realized the toddler with her father’s brown hair and her mother’s blue eyes had meningitis, she was rushed to the hospital and stayed there for days. Doctors saved her life, but not her hearing. When she went home to her family’s Manhattan apartment, Caitlin was profoundly deaf. Her parents, Steve Parton, an artist, and Melody James, an actress and director, were in shock. “People speak of the grief they feel on learning of their baby’s hearing loss,” James said years later. “For me, it felt like steep walls were suddenly in the path of our child’s possibilities.”

  It was 1987. Fewer than three thousand people in the world had cochlear implants, nearly all of them adults who had lost their hearing after learning language. Those who’d heard before were thought to be more likely to succeed with the new device. “We didn’t know how long their memories for sound would stay, but one assumed that they could tell us better what it was like,” says Graeme Clark. For Clark and many other researchers, however, adults were just the beginning. “Deep down, I hoped it would help children,” Clark says. “To give them an opportunity to communicate in the world of sound was really my life’s work. But I couldn’t do it until I’d done it in adults.”

  Whether a young brain that had never heard could make sense of what it received through an implant was a critical question. And it was one for which there was not yet a good answer. The explosion of studies in neuroscience and brain imaging lay a few years ahead. Helen Neville had just begun her studies of the brains of deaf and blind subjects in 1983. “Helping children was a completely different ball game,” says Clark. “On the one hand, the theory was that [with] children, because their brains are supposedly plastic, you could give them anything and they might understand it. On the other hand, the contrary argument was: If they’ve never been exposed to sound, then these artificial electrical signals aren’t going to be as good as the real thing. The dilemma was: Which hypothesis was correct?”

  The stakes were different for children as well. “For kids, of course, what really counts is their language development,” Richard Dowell told me. In addition to working with Rod Saunders and George Watson, Dowell had to figure out how to test the implant’s viability in children. “In kids, you’re trying to give them good enough hearing to actually then use that to assist their language development as close to normal as possible. So the emphasis changes very, very much when you’re talking about kids.”

  Looming over the scientific question was the ethical question of whether it was right to subject young children to what amounted to experimental surgery. Clark’s team tested issues of biological safety aggressively. But an implant for a child might be in place for decades, for a lifetime. Were the unproven possibilities worth the unknown risks—or even the known risks that accompany any surgery? Many clinicians were skeptical, sometimes angrily so. In 1984, one prominent otolaryngologist was quoted in Medical World News as saying, “There is no moral justification for an invasive electrode for children.” He told the journal he found the cochlear implant a costly and “cruel incentive,” designed to appeal to conscientious parents who may seek any means that will enable their children to hear. “It’s a toboggan ride for those parents, and at the end of the ride is only a deep depression and you may hurt the kid.”

  For Bill House, it was meeting families of children who couldn’t hear that had catalyzed his interest in deafness. Just as he hadn’t let scientific and clinical skepticism stop him from operating on adults, he also pushed forward with children who’d lost their hearing to meningitis. As early as 1981, he had put his single-channel implant into the youngest person to be implanted to that point, three-year-old Tracy Husted. In 1984, two-year-old Matt Fiedor became the seventy-third child to get one of House’s implants. His mother, Paulette, told me, “I was convinced that he had nothing, and if he could get any benefit from this device, something would be better than nothing.”

  There were no guarantees. Results to that point were extremely limited. Only about one in twenty recipients of any cochlear implant could carry on a conversation without speechreading. Consensus was growing, however, that the Bilger report had been correct and a multichannel implant was the most promising way forward. That view would be made official in a statement released following a 1988 conference convened by the National Institutes of Health.

  After his implant was approved for adults in 1985, Clark began to work cautiously backward. That same year, he operated first on fifteen-year-old Peter Searle, then a ten-year-old named Scott Smith and, in 1986, five-year-old Bryn Davies. All three had lost their hearing as young children. The older the child, the longer he had been deaf. “The fifteen-year-old you could show some detection of sound but very limited benefit,” remembers Dowell, who worked with all three boys, using some twenty-five speech production and perception tests—far more than are used today. The tests couldn’t be very hard, since Dowell needed measures the kids might actually be able to achieve. He asked the boys to distinguish between one-and two-syllable words. He gave them closed-set and open-set words and sentences to repeat. “The ten-year-old was maybe a bit better.” Bryn Davies, the youngest, had only been without hearing for two years when he got his implant at the age of five. Meningitis had ossified some of his ear canal and made it difficult to insert the electrodes very far. Nonetheless, his results were better than those of the two older boys. “He showed some promise,” says Dowell, “enough to make you think, Aha! Now we’re getting to somewhere.” At that point, clinical trials, the round of research in which larger groups of children would get the implant and be cl
osely watched and evaluated for several years, began.

  • • •

  In search of help, Caitlin Parton’s parents had found their way to a New York City organization called the League for the Hard of Hearing, which offered information, speech therapy, and support groups. (Today, it is the Center for Hearing and Communication.) Because Caitlin had begun life with hearing, the Partons wanted to try an oral approach. Caitlin got hearing aids and began speech therapy, but the aids didn’t help much. The League for the Hard of Hearing had been enlisted by Cochlear, the Australian company developing Clark’s implant, and one of his collaborators, Dr. Noel Cohen of New York University Medical Center, to help find candidates for the clinical trials with children. As a preliminary step, the FDA had specified that the first clinical trial should include only children who had been born hearing and then become deaf, rather than those born deaf.

  Caitlin was perfect.

  “They said this device would give Catie a greater awareness of environmental sounds. That’s all they promised us,” said Steve Parton in an interview some years later, “that she might be able to hear cars honking and dogs barking. As parents living in New York City, that sounded pretty good.”

  It was no small thing, though, to have a child in an experimental trial. “There were no other families to talk with, no children to observe, no research studies to pore over and compare, no Internet, no listservs, no Twitter, no one to look at and speak to and share experiences with. There was no track record for the children,” said Melody James. “It was like skating out on thin ice.”

  At the age of two and a half, Caitlin Parton became one of the youngest people in the world—and one of the first children that young in the United States—to receive a multichannel cochlear implant.