Speaking Up

How a childhood of whispers brought on by premature birth led one young man to surgery and a new voice

When Matthew Storey was a little guy, too young even for kindergarten and at the age when any mishap elicits a call for mama, he slammed his hand in the car door. But it wasn’t an anguished scream that caught his mother’s attention — it was the “non-scream.”

“Poor kid had his mouth wide open, and nothing was coming out,” his mother, Gloria, says.

Matthew weighed 1 pound, 13 ounces when he was born. He fit into the palm of an adult’s hand and spent the first three-and-a-half months of his life in a hospital. Doctors continually reminded his parents of all the potential complications that can befall “micro-preemies.” They include mental disabilities, difficulty walking, and blindness, among others.

None of those things happened, however, and Matthew grew up to be a relatively healthy boy. Yet something wasn’t totally right, either. Matthew never screamed at the top of his lungs when he was unhappy or in pain. He could never yell with childish glee. His little body just wouldn’t allow his voice to break free.

In fact, the more Matthew wanted or needed to be loud, it seemed the more his voice fell silent, Gloria says. At any other time, it never went above a soft, raspy whisper. Put just a couple of feet between Gloria and her son, and she says he might as well have been mute. It wasn’t until Matthew was 2 that a doctor discovered the problem during the process of removing his adenoids to combat chronic ear infections.

“The doctor told me he couldn’t believe that this child could make any sound at all,” Gloria says. “One of his vocal cords was atrophied to the point of almost being non-existent.”

With only one functioning vocal cord, Matthew’s voice never developed — a side effect of the efforts doctors took to keep Matthew alive at birth. He had to be intubated for about two months, and doctors now believe the tubes probably pushed up against one of his vocal cords, causing it to become paralyzed and eventually atrophy from non-use. It may not have been among the more dreaded complications of being born prematurely, but it has certainly been life changing, Matthew says, informing along the way his personality, how he relates to others, and how he sees the world.

It also led him on a mission to fix the problem that ended only last fall. Sitting in a coffee shop in Royal Oak recently, Matthew, now a senior at Oakland University, chatted relatively clearly as the result of a special surgery he received last November at Henry Ford Hospital. Before that, there had been several years of failed attempts to fix his voice through more conventional methods. Those experiences made him skeptical that the surgery involving a small plastic implant would prove more successful, and he admits he’d basically given up hope that his voice would ever register above an extremely soft whisper. “My whole life, people asked me if I was sick, and at a certain point, I was like, ‘Yeah, I’m sick,’ ” Matthew says, rolling his eyes. “I was sick of having to explain it.”

Matthew’s experiences don’t surprise Dr. Robert Stachler, an ear, nose, and throat doctor and a specialist in vocal disorders at Henry Ford Hospital, who performed Matthew’s surgery. It’s extremely rare, Stachler says, for a child to grow up without the ability to speak simply because of extreme vocal-cord dysfunction. Most of his patients, he says, are older and have experienced either extreme trauma to the voice box or are victims of diseases like throat cancer that can damage the vocal cords. But at least these patients have at some point known what it’s like to have a voice, Stachler notes. “The voice is crucial — so crucial,” Stachler says. “The voice means everything.”

Under normal circumstances, two functioning vocal cords come together to vibrate to produce sound when we talk. The result is the voice, unique like a fingerprint, both pragmatic and mysterious in its qualities. It’s an integral part of personality, Stachler says — the thing that essentially makes all of us sound like ourselves.

Matthew says he always felt like “himself,” but just grew up acutely aware of how people perceived him when he talked. This led him to become introverted and shy, he says, but largely only because he could empathize with the fact that people just couldn’t understand him. So Matthew learned how to be quiet in most social situations, content to observe, instead. He vividly remembers family reunions as a young child when he would listen intently as other kids ran around yelling. And as he got older, when teens his age were talking on their cell phones, he had to shun the practice because the phone seemed to make his soft, whispery voice even less understandable.

“I’d conditioned myself not to talk on the phone,” Matthew says.

But when he was 18, Matthew and his mother began to explore ways to make his voice better. Gloria constantly worried that her son’s vocal issues would become a professional liability, even as Matthew had come to accept that this was something he would probably have to deal with his entire life.

“I mean, this was still my voice, the one I’d had my entire life,” he says. “At the end of the day, I could still do everything that other kids could do.”

Aside from his lifelong inability to talk, having just one good vocal cord had also taken its toll physically. Vocal cords do much more than allow a person to speak — they’re also the muscles that help close the throat while swallowing liquids and food. Because Matthew had such ill-functioning vocal cords, liquids often went into his lungs, causing him to suffer several bouts with pneumonia. And whenever he got a cold, it would last for months because he wasn’t physically able to expel mucus.

But every doctor they visited offered only two courses of treatment. Matthew says standard vocal therapy didn’t help at all. A second treatment, which involved the repeated injection of gels into the paralyzed vocal cord in an attempt to push it closer to the other, often was ineffective and typically wore off after six months. Matthew says these therapies eventually stopped working altogether, and his voice seemed to be further deteriorating by the fall of 2011.

When he finally visited Stachler, Matthew says it was the first time anyone had suggested using an implant, which would, in theory, permanently push the paralyzed vocal cord toward the other so the two could finally vibrate together regularly. Such implants aren’t exactly uncommon, Stachler says, but aren’t typically used in most cases where vocal therapy and injections can suffice. Matthew’s case was so severe, however, that Stachler took the more invasive approach with a procedure that required Matthew to be conscious during surgery with the ability to produce sounds so Stachler could be sure the implant was functioning.

It worked. For the first time in his life, in November 2011, Matthew began to speak with relative clarity.

Stachler had Matthew call his mother on the phone from the operating room — a memory that now causes Gloria to become emotional.

“It was the first time,” she says through tears, “that I could ever hear Matthew on the phone.”

Her reaction only underscores how much Matthew knew that his condition had affected his life and the lives of those around him. He says he doesn’t feel that anything has really changed for him, except that he no longer has to worry about how others are reacting to him.

He’s pursuing his goal of becoming a talk-therapy psychologist, which requires a lot of listening, a skill he says remains one of the strongest aspects of his character.

“I’ve spent so much time watching and listening to people,” Matthew says. “I realized that you could read as much into silence as you could into words.”

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