Growing too fast

Published 10:17 am Tuesday, November 19, 2013

Colton Tabor, 18 months old, sits with his mother, Shannon Tabor. Colton was diagnosed with hemihypertrophy, a rare condition in which one side of the body grows faster than the other. Shannon held a fundraiser at Godfather’s Pizza for Lift Up Hemi Inc., the organization raising awareness about hemihypertrophy. -- Matt Peterson

Colton Tabor, 18 months old, sits with his mother, Shannon Tabor. Colton was diagnosed with hemihypertrophy, a rare condition in which one side of the body grows faster than the other. Shannon held a fundraiser at Godfather’s Pizza for Lift Up Hemi Inc., the organization raising awareness about hemihypertrophy. — Matt Peterson

Shannon Tabor had never heard of hemihypertrophy until last year. After all, the rare genetic disorder that causes one side of a person to grow larger than the other isn’t all that common — about 1 in 86,000 people are diagnosed.

But the Austin woman’s 18-month-old son, Colton, was that one when, during his two-month check-up, Shannon saw something she found odd.

“At his two-month appointment, I noticed his right leg was bigger than his left,” Tabor said. “The doctor told me sometimes that can happen, and we’ll just keep an eye on it.”

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Colton’s right leg was 1 centimeter bigger than the other then, but only a few weeks later that leg grew to 2 centimeters longer than the left. His arm and hand were also getting bigger.

That’s when doctors recommended Shannon take Colton to Mayo Clinic, where geneticists were able to diagnose Colton with hemihypertrophy.

The problem with hemihypertrophy is its dangerous side effects. Those with hemihypertrophy are at increased risk for tumors and cancerous growths, not to mention scoliosis and a host of other problems.

Supportive bracelets and informational material about hemihypertrophy await guests Monday night at Godfather’s Pizza.

Supportive bracelets and informational material about hemihypertrophy await guests Monday night at Godfather’s Pizza.

For Shannon and the rest of the Tabors, the diagnosis was puzzling at first, then a little scary.

“I came home and searched it, and kind of got fear, and worried,” she said. “With it, there’s a risk of tumors. Seeing all that, it just kind of scared me. It helped me prepare for questions for the next time he went in.”

Little Colton has been lucky, however. Doctors immediately monitored Colton’s condition through ultrasounds and blood work every few months or so. They found a tumor on Colton’s glands not too long ago, and Colton went through one of two surgeries to remove it — the other surgery was to prevent his adenoid, a mass of tissue within the nose, from outgrowing his body and suffocating him.

Shannon was told the tumor doctors took out was benign, but it could have grown cancerous if left undetected.

For now, Colton will continue to be monitored with blood work until age 4, ultrasounds until he’s 8 years old, and regular visits to orthopedic doctors for the rest of his life. Though he has only had two surgeries thus far, Colton appears to have a milder case of hemihypertrophy.

Still, that doesn’t take away the fact that Colton could have more surgeries in the future.

“I do worry about how things continue,” Shannon said. “He’ll probably have to have a surgery.”

Yet Shannon credits Colton’s doctors, as well as Lift Up Hemi, Inc., a charity that helps families affected by hemihypertrophy. She has also found support groups, including one nearby resident who also has the genetic disorder.

Shannon and family held a Godfather’s Pizza benefit for Lift Up Hemi on Monday night, with proceeds going to the organization, which will eventually be used to do anything from pay hospital bills to help people with hemihypertrophy around the world buy shoes, which is no small task when one foot is bigger or one leg longer than the other, according to Shannon.

Yet Shannon is glad to have her son, and glad Colton will be around for a long time.

“We are blessed that we found out ahead of time,” she said. “Because that one mass, what would have happened if we didn’t find it?”