When a child is extremely short, should a parent consider growth hormone?

Erica Nicholson knew that her son, Sam, was small. Considering that she was barely 5 feet and 100 pounds and that his older sister was a “peanut,” it didn’t seem unusual.

“I make small babies,” Nicholson said. But her daughter was growing. Sam, however, was so small that he looked like a baby compared with his peers, she said. When he was 4, his feet did not touch the ground on a training bike his sister had used at the same age.

A pediatric endocrinologist determined that Sam had celiac disease, an autoimmune disorder that inhibits nutrient absorption. Switched to a gluten-free diet, he grew an inch in a month. But his growth rate was still slow. Doctors predicted he would be no taller than 4-foot-7 as an adult.

Nicholson set out on a search for answers, going from “one scary diagnosis to another,” she said, eventually finding success with growth hormone, a costly and controversial treatment.

Parents of short boys are thought to be more likely to take such action than those of short girls. Some note that short girls may be socially accepted and called cute while short boys face teasing and possible disadvantage. Others, such as Nicholson, worry that something is just not right.

Tests ruled out a rare genetic disorder, Russell-Silver syndrome, as well as a form of dwarfism and growth hormone deficiency, a condition in which the pituitary gland does not produce enough of the hormone needed for tissue growth.

Finally, when he was 5, a doctor determined that Sam had idiopathic short stature, or ISS, which means that no reason for his poor growth had been found.

Sam started growth hormone treatment two years ago. Now 7, he has grown eight inches. “He is in the 8th percent on the growth chart,” Nicholson said. “You’re happy to have that.”

One of the most emotional issues regarding treatment is the role that height plays in our cultural beliefs about success and happiness.

IHPI member David Sandberg, a pediatric psychologist at the University of Michigan’s C.S. Mott Children’s Hospital, who has spent 18 years looking at the psychosocial aspects of short stature, said there are very strong stereotypes associated with height, some based on outdated preferences explained by anthropology.

At one point in our evolution, height was an important feature of attractiveness because it was a sign of good nutrition and physical health, Sandberg said. While height is no longer such a strong indicator in Western societies, “the beliefs about the disadvantages of being short are so powerful that no evidence is going to counter that.”

Sandberg’s research shows that the stereotypes about the disadvantages of being short do not hold up. In a seminal study, he investigated whether height was a strong predictor of social adjustment for children in grades 6 to 12 in a suburban school district. In one exercise, students were asked to cast peers in a class play for roles portraying various characters, including some described as “good leader” and a person who “has many friends,” as well as one who “is often left out.”

There was only one role where short kids were disproportionately nominated, he said: “Looks younger than they are.”

In a separate study, Sandberg asked children age 8 and older whether they were teased about their height and how frequently they were treated as if they were younger. He found both experiences to be common among short children, he said. “Nobody likes to be teased,” he said, but such stressors did not translate into dysfunction.