Kansas City family sees success with growth hormone

KANSAS CITY, Mo. - As her parents look on, 13-year-old Angela Shilling sits comfortably at the piano. Her feet have no issue reaching the pedals. She is perfectly average. After years of growth hormone treatments, average is something the Shilling family celebrates.

Seven years ago, her parents Stan and Paulette noticed their little girl was truly little and by far the shortest in her class.

“It was her weight,” Stan said. “I think she was just over 40 pounds.”

Their pediatrician recommended a trip to the endocrinologist. After a test at the hospital, the Shillings found out Angela had a growth hormone deficiency.  She was only ever expected to grow to 4-foot-7.

“I was really concerned that if she didn’t have this treatment that she would go through life just feeling that she didn’t fit in,” Paulette said.

The treatment was daily growth hormone shots. Since then, Angela has been giving herself a shot once a day before bed. Starting this journey wasn’t easy for the family; they wondered if hormones were the answer.

“Is this the way God would want her to be?” Paulette said.

She admits she and Stan went back and forth. The Shillings, after all, are a family of relatively short people. But the possible difficulties of living a life so much shorter than 5 feet tall helped them decide.

Paulette said she was warned it might be difficult for Angela to find clothes as an adult and she would have to have a modified car.

“Are you going to be able to drive when you’re an adult?” echoed Angela Lennon, MD.

Lennon is Angela Shilling’s current pediatric endocrinologist at the University of Kansas Hospital. She treats children like Angela who have a medical condition like growth hormone deficiency, Turner Syndrome or Prader-Willi Syndrome.

But Lennon admits it isn’t odd for families with perfectly healthy children to ask for the treatment too.

“I’m here to help people with health problems,” she said. “Not ‘I just want to be taller.’”

Lennon adds that many people come to her just wanting the treatment for cosmetic reasons. In 2003, the FDA took the need for a medical condition out of the equation. The FDA began allowing growth hormone treatment for people with idiopathic short stature. That means they’re perfectly healthy, just very short.

“It was idiopathic short stature that opened the flood gate,” Lennon said.

So what constitutes average? CDC growth charts show the average woman falls between 5-foot-4 and 5-foot-5. The average man grows to between 5-foot-9 and 5-foot-10.

But Lennon said a girl who isn’t expected to grow taller than 4-foot-11 or a boy who isn’t expected to grow taller than 5-foot-3 would be eligible for growth hormone treatment under idiopathic short stature.

Lennon said more families now come in simply offering to pay for the treatment even if they don’t qualify.

“Then they get the price,” she said.

Without insurance, the drugs can cost tens of thousands of dollars per year. That keeps most people who don’t need the treatment at bay. But even if a family had the means, they couldn’t get the drugs from Lennon.

“I would not treat that,” she said. “That is my ethical obligation.”

Angela Shilling’s case was never about vanity and the family said years later, it was all worth it. Angela now stands at 5-foot-2.

Paulette and Angela laugh, standing back to back.

“She’s taller than me now!” Paulette said.

“I can grow to be just like all the other kids and I can just get on with my life and be normal,” Angela said.

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