Scott Hamilton’s early life was an endless parade of hospital rooms, needles, and foul-tasting medicines. He was pale, sickly, half the size of most other kids.
Doctors had no idea what was going on. Their patient couldn’t properly digest his food. He wasn’t getting enough nutrients. At age nine, he was the same size he’d been at four- and-a-half years old. No matter what treatments they tried, his condition didn’t improve. In fact, he kept getting sicker.
That patient was Scott Hamilton. His parents, Dorothy and Ernest, who had adopted him when he was just six months old, were beside themselves. Doctor after doctor had tried to diagnose their son’s illness. All of them had failed.
Chamber of horrors
Hamilton’s life became an endless parade of hospital rooms, needles, and foul-tasting medicines. He was pale, sickly, and half the size of most other kids his age. It didn’t help that the feeding tube delivering the nutrients he needed to stay alive hung conspicuously from his nose. He became an easy target for his peers.
Illness robbed Hamilton of even the simplest childhood joys. His parents put him on a super-strict diet — no wheat, no flour, no dairy, and no sugar. They made him take supplements so foul-tasting that he secretly spit them out into the sink.
The indignities continued. To look for a possible blockage, doctors threaded a string down into his intestinal tract. They left a spool of it hanging over his shoulder. In an active elementary-schooler, it was an accident waiting to happen. “I was playing and some little boy got his airplane caught in my string and started pulling it out. He got scared and left, and I’m left holding this string out. And they thought I did it. So I spent two days straightjacketed so I wouldn’t touch the string,” he remembers. He describes that period of his life as “a chamber of horrors.”
Fight to survive
In their quest to diagnose their son’s mystery illness, the family set off on a four-year-long hospital trek. “We started at the Memorial Hospital in Bowling Green, Ohio, where we lived. And then, no answers, let’s go to a bigger hospital, bigger city. So we went to Toledo Children’s Hospital. No. Ok, let’s go up to Ann Arbor, University of Michigan Children’s Hospital,” Hamilton says.
Throughout the many stops on his hospital tour, Hamilton saw dozens of doctors, who offered nearly as many possible diagnoses. A specialist at University of Michigan Hospital told his parents if they didn’t find an answer soon, their son might not survive.
Refusing to give up, the family went to see one of the country’s leading pediatric nutrition experts, Harry Shwachman, MD, at Children’s Hospital in Boston. Schwachman had discovered the eponymous Shwachman-Diamond syndrome, an inherited bone marrow disorder with symptoms suspiciously similar to Hamilton’s. “I was there for a long time, and he was trying to prove that I had it,” Hamilton says. “And he proved that I didn’t have it.”
All diagnostic options exhausted, Shwachman urged Hamilton’s parents to stop looking. “His advice was, ‘Go home, live a normal life, keep him off all the diets but keep him on the supplement, and see what happens,’” Hamilton says.
A frozen cure
In November 1967, the family returned home to Bowling Green. Four years of searching had brought them no closer to a solution to his illness. “My parents were so exhausted. They were just shattered, emotionally and physically,” he says.
Their family doctor suggested they take a break by sending their son skating. So Hamilton spent a morning at the recently constructed ice skating rink at Bowling Green State University. “My parents got to have a morning to themselves and it was great. They got to recharge their batteries, and I got to do something brand new with well kids and that was pretty awesome,” he says.
He quickly took to skating, getting faster and more agile on the ice with each subsequent visit to the rink. Something else happened, too. His stomach stopped revolting against the foods he ate. His lungs, which had been filled with phlegm, cleared up. He started to build muscle and grow taller. “As I skated, everything started moving better and everything started working better, and all of a sudden I started growing, and it was sort of miraculous,” he remembers. “It really makes no absolute medical or scientific sense. But skating changed everything.”
Answer to a medical mystery
His health miraculously restored, Hamilton turned his attention to skating. For the next few decades, he didn’t give his mysterious ailment much thought.
Then, in 2004, Hamilton was diagnosed with craniopharyngioma — a benign tumor of the brain, discovered near his pituitary gland. As his wife, Tracie, read through the informational materials the doctor had provided, she had an “aha” moment.
“She goes, ‘Oh, look at this! Craniopharyngiomas are usually found early in a child’s life due to a lack of growth and development,’” Hamilton says. “So we guess that’s what stopped me growing all those years.”
Hamilton believes the tumor lay dormant throughout his skating career, only to resurface many years later. The cause of his illness was finally revealed. “See, if you live long enough, all questions will be answered,” he says.
May 15, 2017
Christopher Nystuen, MD, MBA