Profile of one child’s courage raises insightful questions

Sam

The Boy Behind the Mask

Tom Hallman Jr.

Putnam: 224 pages, $22.95

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Picture Sam Lightner: an eighth-grade boy, small for his age at 5 feet and 83 pounds, getting ready to cross over from the relative safety of middle school to the raucous hormone hell of high school. Sam agonizes over what to wear to the open house at Portland’s largest high school, which he’ll attend in the fall. “He’s discarded one shirt after another, trying for the right combination,” writes journalist Tom Hallman Jr. in his triumphant, intense and bittersweet telling of Sam’s young life. “But it doesn’t matter. Sam could show up in the latest fashion, and still, he knows, no girl will swoon over him. Tonight, he simply wants to blend in and be like everybody else. He knows that will be impossible.”

Once you’ve pictured this slight boy, add what people notice first: Sam’s face. “A huge mass of flesh balloons from the left side,” Hallman explains. “The main body of tissue, laced with blue veins, swells in a dome from sideburn level to chin. The mass draws his left eye into a slit, warps his mouth into a small inverted half-moon. It looks as though someone had slapped three pounds of wet clay onto his face, where it clings, burying the boy inside.” Hallman’s extraordinary book, telling the heart-wrenching tale of Sam’s facial deformity and its impact on his life and health, grew out of a four-part series he wrote for the (Portland) Oregonian and for which he was awarded the 2001 Pulitzer Prize for feature writing.

The extremely rare congenital deformity causes a number of physical problems. Sam must breathe through a tracheostomy, a hole in this throat that allows air to funnel directly to his lungs, bypassing the swollen tissue that blocks the usual airway; he cannot go swimming because he’d drown easily with the tracheostomy, and cannot play contact sports because the weight of the deformity throws him off balance easily.

The physical problems seem almost trifling when compared with the emotional pain. Sam is an extremely smart student, clever and innovative, yet is often misjudged: Those who don’t know him think he’s stupid or developmentally handicapped. Many stare open-mouthed, others yell jeers from passing cars: “Freak!” Even faculty members at the high school assume on first glance that Sam belongs in the developmental program.

The facial mass is so large and unusual that doctors knew something was wrong even before Sam was born, but they couldn’t figure out what. After performing an ultrasound during the seventh month of pregnancy, doctors warned that “(t)he baby’s brain is floating outside the head” and predicted the child would die. At birth, his parents learned there was nothing wrong with Sam’s brain; it was his face that was the problem.

Initially, doctors thought the mass could simply be removed. Just after Sam’s birth, one doctor covered the deformity with a cloth. “This is what he will look like after surgery.” But that assessment was wrong. A pediatric surgeon was able to remove part of the mass in order to ease Sam’s breathing, but too many nerves and blood vessels ran through the mass for it to simply be cut off. Several years later, Sam underwent another surgery, in the hopes of reducing the disfigurement, but he bled heavily from the first incision and the attempt had to be abandoned.

Hallman adroitly delineates the background of Sam’s life, leading up to the boy’s choice as a high school freshman -- with his family’s blessing -- to gamble with his life and try surgery again. Sam’s case is taken on by an elite team of surgeons at Boston’s Children’s Hospital, the only surgeons in the nation willing to grapple with the complexities of his unusual case, and undergoes a grueling 13-hour surgery. He nearly dies in the process but survives, only to find months later, when he’s back in Portland, that the surgery has had the unintended effect of altering the blood flow to and from his brain.

As a result, fluid builds around Sam’s brain until he slips into a coma. Readers follow along as doctors fight over what to do and his parents agonize. Days drag on with little or no response from Sam. Will he come out of it? Should he be left to die? His family and one pediatric neurosurgeon, Monica Wehby, fight for Sam, believing he’ll recover. With only intuition and faith guiding her, she must tolerate the gibes of colleagues for her belief that Sam will emerge from the coma. Hallman is marvelous as a journalist-storyteller, imbuing Sam’s tale with an insightful, human and compassionate timbre. He takes readers inside Sam’s experience and his parents’ difficulties while subtly raising questions about our society: Why are we so set on judging each other by looks? What kind of future awaits Sam with his generous heart and incisive mind hidden behind a deformed face? What possibilities exist when science and faith intersect?

The true story of a boy with more courage than should be required of anyone, “Sam” is a heartbreaking tale with no easy answers, a story that earns every tear it wrings.