When Jason Heesch was 6 years old, he measured just under four feet tall, and then he stopped growing.
A few years later, after doctors diagnosed a pituitary gland problem and prescribed thrice-weekly shots of human growth hormone, he gradually grew several inches more.
Today, at 14, Jason is 4 feet, 5 1/2 inches tall and, by choice, he will grow no taller. He and his parents have decided against starting treatment with Protropin, the trademark name of the first genetically engineered human growth hormone approved by the Food and Drug Administration. It was approved Friday.
"It's too unproven," Jason's mother, Arlene Heesch, said Saturday. "We're frightened there might be side effects, problems we won't find out about for years."
"Not everything the FDA approves is perfect," said his father, John Heesch.
'I Like Him the Way He Is'
"Short stature is not a life-and-death problem, and I like him the way he is," he added, grinning at his undersized but overactive son.
In another household, the same issue was being debated Saturday.
"We're contemplating it," said George Redman of La Palma, whose son Aaron, 18, suffered the pituitary problem when he had a brain tumor removed at age 4.
"He's 5-foot-3, and if we don't go on (with the new therapy), that will be it. Five-foot-three isn't so bad, but it's a decision that has to be made," Redman said.
The FDA approval of the product, developed by Genetech of South San Francisco, has been heralded as a major step for genetic engineering and for children afflicted with the growth hormone deficiency, which can prevent them from growing more than 4 feet tall.
Children with growth hormone deficiency are usually normal in size at birth but fall noticeably behind other children in growth by the time they enter school. Treatment for the problem must be completed before they reach puberty--which often is delayed because of the hormonal upset--when bone growth stops.
But the Heesches believe they have reason to be cautious. For three years Jason took human growth hormone--taken from the pituitary glands of cadavers--which, earlier this year, was linked with a fatal disease.
Three People Died
Jason's doctor, endocrinologist David Mosier of UC Irvine, said three of the 27,000 people taking the human growth hormone nationwide have died of the disease, produced by a slow-growing virus that takes years to surface. UCI stopped providing the serum to patients in its human growth hormone program about June this year after learning of the risks, Mosier said.
"We've been waiting for an alternative, and this is probably a good alternative," Mosier said Saturday.
UC Irvine microbiology professor Wes Hatfield said that the new hormone should be free of the virus because genetic engineers developed it by cloning an uninfected human cell and growing a bacterial cell.
"It's good news," Mosier said of the FDA's approval. "There have been some problems suggested, that bacterially derived growth hormones might cause long-term problems. . . . It's very vague, but some have raised the concern."
Mosier has another concern: that the growth hormone will be prescribed for children who do not suffer the pituitary problem but who are simply short. "I would be reluctant to use this material in children who are not growth hormone deficient," he said. "I'm reluctant to use it in a large-scale way until we know more about it."
But the safety concerns are enough for the Heesches, Long Beach residents who own a Costa Mesa liquor store. Arlene Heesch said she would not be able to live with the guilt if she allowed Jason to take the newly approved hormone and then learned years later it caused fatal or debilitating side effects.
Cannot Wait Too Long
"We don't want to play with Jason's life that way," she said.
In La Palma, Redman said that the FDA approval "makes me feel a little easier. But they haven't had this around long enough to know for sure." Because of his son's age, Aaron cannot wait too long to decide whether to take Protropin.
"We'll weigh everything, and then call Dr. Mosier and get started, or not get started," he said. Aaron, a Cypress College student, was on the human growth hormone therapy for about 13 years, Redman said.
"He'd like to be 5-8, 5-9, but he's a happy young man. He's adjusted real well to all of that," Redman said.
The Heesches don't know why Jason developed the pituitary gland deficiency, but they suspect it was a result of his premature birth. As a baby he had hyaline membrane disease, a lung affliction that robbed his brain of sufficient oxygen and possibly affected his pituitary gland, Arlene Heesch said. The Heesches have another son who is two years younger than Jason, and two inches taller.
Jason said he does not miss one bit the painful growth hormone therapy.
"I took a shot every Monday, Wednesday and Friday--every other day except weekends--for more than two years. That's more than 300 shots," he said. After about the first 100, he administered the shots himself, but it didn't make them hurt any less, he said.
Upset by his son's constant complaints of the pain, John Heesch even took one shot himself to better understand Jason's agony. The shot was indeed painful; the serum entering the body tissue felt "like a wasp sting," he said.
Jason's last shot was on May 19, "as soon as we heard" about the hormone's possible link to the fatal virus, Arlene Heesch said.
Jason now has a "bone age" of about 11 years, and if he were to take the newly approved hormone, he would grow no taller than 5 feet, 5 inches tall, John Heesch said.
Jason, a ninth-grader at Lindbergh Junior High School in Long Beach, said he does not mind too much being about a foot shorter than his classmates.
"In seventh grade, I was popular because I was short," he said. He was elected to class office that year, and this year he was just elected to his school's Junior Optimist Club. He takes part in volleyball and weightlifting, he said.
Fought Off Taunts
But it has not always been easy for him. Jason has fought off the taunts of children, his parents said. In earlier years classmates would pick him up and toss him around--once depositing him in a trash can. Arlene Heesch remembers being hurt to tears at a school parents' night when another student's mother made a flippant remark about Jason's size. Jason took his mother outside and told her that happens every day to him.
"He said: 'If you let it get to you, you'll never make it.' I was so proud of him," his mother said. "He's grown up on the inside."