July 2004

ARTICLE TOOLS

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When Aaron Barg was three months old, a hernia left him in almost constant pain. Finding a surgeon who could repair the hernia was easy, say his parents, Steve and Susan Barg. But finding an anesthesiologist was almost impossible.

With a rare genetic disorder called Trisomy 13, Aaron was born with a weakened heart and lungs and an undeveloped brain, and he was deaf and legally blind. Doctors told the Bargs that Aaron would most likely die within a year. If he survived beyond that time frame, his life would have little quality—he'd never speak, walk, or feed himself.

For most anesthesiologists, the risk was too high. They felt any operation could kill Aaron.

Getting the medical community to regard Aaron as a person worth saving was a challenge. Susan Barg remembers that doctors didn't refer to him by name, but only "baby Barg." Though doctors commonly refer to even healthy babies this way, she found it symbolic of their attitude toward Aaron.

"He has a name," she would insist. "Please use it."

During a medical visit, Barg asked an anesthesiologist if he would like to hold Aaron. He did so for a full hour, and only then did he agree to assist in an operation. Since then, the anesthesiologist has helped in several more operations for Aaron.

"He holds Aaron, and he becomes a human being," Barg says. "Not a statistic, not a piece of medical research on a piece of paper—but a human being with a name who responds to touch and cuddling and love."

Now 13, Aaron is a handsome boy with blond hair and a face that lights up when someone he knows comes by. Bend down by his wheelchair and he'll pull your face close to his, stare deeply into your eyes, and stroke your face. Though he can't speak, his eyes and hands tell you that he ...