Missed Diagnosis

This two-story house in a cozy subdivision just northeast of Boulder, with its bountiful flower garden, shutters and gables, and a kid-sized bike propped up on the broad front porch, doesn't seem like the home of a starving child.

But for the first five months of her son's life, Sharon Randel watched the healthy baby fat on her child's limbs waste away. For two years since then, she has questioned how his doctor--and the secretive, highly powerful board that governs the doctor's license--could have let this happen.

Little Gregory, born full-term on January 23, 1997, at seven pounds, eight ounces, had been a poor eater from his earliest days at the hospital. He had a strong sucking instinct, but tired easily when nursing. By the time he was two months old, Greg was in the bottom tenth percentile on the growth chart that doctors use to monitor a baby's weight gain to make sure it is consistent with other children of the same age. His older brother and sister had been large, robust babies.

Instead of growing stronger and more responsive, as a healthy infant would, Greg was lethargic, didn't seem alert and couldn't hold his head up. His cry was weak, startlingly weak.

During those first five months, Randel took Gregory to his pediatrician or one of his pediatrician's partners nineteen times, repeatedly expressing concerns about his low weight gain. His stools, once mucusy, had dwindled to nearly nothing at all. The pediatrician, Stephen Fries of Boulder, never ordered tests and noted in his records in March that "Greg is not eating too well and Mom continues to be worried about it...He looks like he is well-nourished and is nicely filled out. He is not a very big child."

By early June, when Greg was four-and-a-half months old, Randel again went to see Dr. Fries, who had been the family's pediatrician for more than twelve years. "I was still concerned about eating and constipation," she recalled in a hand-written synopsis of their visit. "Dr. Fries said he's okay. He said, see you at his six-month checkup.

"At home during this time, Greg was doing worse. He would just lay on the floor. Greg did not move much, even when I was holding him. My worry increased, along with worry from many neighbors and friends."

A week later, Randel's husband, Bill, a physicist and atmospheric scientist, once again took Greg to the doctor. Fries told him that Greg's mother was probably "suffering from some post-traumatic stress disorder due to the stillborn death of her other child" seven years earlier, "and I think that she is really having a hard time dealing with that," according to Greg's medical records. "The dad said that he is helping her through that, but they would really like to know if there is anything going on with this child."

A day or two later, Randel consented to a call from a psychologist at the Mental Health Center of Boulder County. The woman asked Randel how she was feeling. "I remember telling her I was upset and worried about my son Greg," Randel recalls. "I said he's not eating and can't hold his head up, and they think he's fine. I said, 'I am anxious and panicked.'" The psychologist advised Randel "to come in to see her and talk about these feelings. I said I am worried about my baby; if I am still worried after the second opinion, I will call her."

Randel contacted the family's health-insurance company to ask for another assessment of Greg's condition but was told that would require a referral from the baby's primary-care provider--in other words, Dr. Fries. Fries referred her to a partner in his practice but, unsatisfied with that visit (the doctor received an emergency phone call in the middle of the exam and had to rush off to the hospital), Randel asked for yet another referral. On June 14, Fries suggested calling the second-opinion clinic at Children's Hospital in Denver.

Three days later, Greg was seen by a medical resident and Dr. Barton Schmitt, director of general pediatric consults, at Children's Hospital. Moving his hand along the baby's belly, the resident found a hard mass ten centimeters long. Schmitt rolled a latex glove onto his hand and examined Greg's bottom; the anal opening was one-fourth the size it should have been for a baby his age. Greg actually suffered from anal stenosis, an abnormal narrowing of the anal opening.

On June 20, after tests to confirm the mass was not a tumor, Greg went into surgery and doctors pulled a large clump of hardened stool from his intestine, enlarged the anus and repositioned it over the rectum. The baby's intestine was found to be inflamed, Randel recalls, and doctors told her it was starting to break down.