Doctors have found nothing wrong with Elizabeth Capo. She walks, talks, runs and plays like many other 11-year-old Miami girls. She’s perfectly healthy.
Yet nearly every night, just before dinner, Elizabeth injects herself with Protropin, a drug that she hopes will save her from the fate nature gave her. She hopes Protropin will make her tall.
At just over 4 feet 4 inches, Elizabeth is shorter than 97 percent of the girls her age in the U.S. If nature had taken its course, her doctor believes, by adulthood she would have grown to about 4 feet 7 inches, maybe an inch taller.
Protropin, a synthetic form of human growth hormone made by California-based Genentech, may be changing that course.
Nobody knows whether synthetic growth hormone, intended for children with hormone deficiencies, works on children like Elizabeth, who seem perfectly healthy and have no hormone deficiency but happen to be short. The National Institutes of Health recently announced that it has resumed recruiting healthy children for a study to determine the hormone’s effects.
Yet thousands of healthy children, and their parents, are turning to medicine to right what they believe is nature’s wrong, raising troublesome questions: How short is short? Is being short a disease? If short people are discriminated against in society, is the answer to make them taller in the laboratory? Is science worsening the stigma of being short by classifying it and offering a way out?
Who is answering all these questions? For now, it’s pediatric endocrinologists and the two drug companies that make synthetic growth hormone, Genentech and Eli Lilly.
“The big moral and ethical dilemma among pediatric endocrinologists is, are we making short stature a pathologic condition?” says Robin Nemery, a pediatric endocrinologist at Memorial Hospital in Hollywood, Fla. “In other words, is there something wrong with you if you’re short?”
More and more, doctors say, parents are coming in with their healthy children believing something is wrong. In most cases, doctors say, the children are just shorter than average. Many children denied growth hormone leave disappointed.
Even the children who receive hormone may be disappointed in the results. “The expectation while receiving the treatment is more than the true gain that they will have,” says Jose Perez-Rodriguez, a pediatric endocrinologist in Kendall, Fla., who has treated short, healthy kids.
Doctors not participating in the NIH study who prescribe the hormone, though, say the children they decide to treat are growing abnormally, not reaching their genetic potential. Once on the drug, the children generally start growing faster and, doctors say, the psychological benefit can be amazing.
“They feel like they’re growing. They’re elated,” says Beth Motzkin, a pediatric endocrinologist who just opened a practice in Coral Springs, Fla.
David Millan, 8, was 3 feet 7 inches tall a year ago, before he started growth hormone treatment. The Kendall boy was growing less than two inches a year, and he was getting into fights at school because the other children were making fun of him, says his mother, Susan.
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“His grades were falling off because of his fighting,” Susan Millan says.
Now, after treatment from Dr. Luis Gonzalez-Mendoza of Miami Children’s Hospital, David is about 4 feet tall. The kids aren’t making fun of him anymore, and he’s doing well in school, his mother says.
David says he’s happy and has more friends. “Now I can play a lot of things that I couldn’t play, like baseball, football, basketball and soccer.”
Elizabeth Capo, a patient of Gonzalez-Mendoza’s, was just over 4 feet tall when she went on the treatment a year ago, at age 10. Her mother, Mitzi, heard of growth hormone from a “Nightline” show televised when Elizabeth was 4, and she had been concerned about Elizabeth’s growth ever since.
Elizabeth wanted growth hormone “because everybody else was taller than me.”
“They were calling me names. They called me shorty and munchkin and shrimp.”
In almost one year of injections six nights a week, Elizabeth has grown four inches. She’s still short for her age, but she’s happy. She wants to be taller than her mother, who is 5 foot 1.
Doctors like Gonzalez-Mendoza and Motzkin say they generally won’t treat healthy children who are predicted to be short. But pediatric endocrinologists across the country are making a controversial exception for at least 6,000 healthy children, according to NIH figures.
A child has to be considered short enough to qualify for growth hormone, but how short is short?
At 4 feet 3 inches, Arthur “Ace” Brinkman, 10, is a head shorter than anyone else on his soccer team, but his doctor doesn’t think he needs growth hormone treatment.
William Cleveland, the chairman of the pediatric endocrinology department at the University of Miami, has followed Ace’s growth since he first saw him more than five years ago.
“The very important thing in a situation like this is to monitor the rate of growth,” Cleveland says. Ace is growing at a consistent pace of two inches a year. Any slower, Cleveland says, and Ace would be a candidate for growth hormone.
Cleveland and other pediatric endocrinologists emphasize that pace of growth is at least as important as a child’s height. Still, doctors look closely at how tall they think a child is going to be.
“I would treat a girl that’s going to be less than 4-10,” says Gonzalez-Mendoza. “I would treat a boy less than 5-4.”
Generally, Gonzalez-Mendoza would treat a child who is predicted to be shorter than 97 percent of the country, but the doctor emphasizes that that’s only a rule of thumb.
The rule of thumb is based on growth charts that are common to pediatricians’ offices. The National Center for Health Statistics, a division of the federal Department of Health and Human Services, crunches the numbers for growth in the U.S.; and several outlets, including drug companies like Genentech, turn those crunched numbers into standard charts that determine what is supposedly normal growth.
The bottom line is, if a child is shorter than 95 percent of the children his or her age, he or she is short. For adults, this “fifth percentile” is about 5 foot 5 for men and 5 feet for women.
Of course, child growth is a lot more complex than that. The truth is, not even specialists know why some healthy children are short. They don’t really understand why short parents sometimes have tall children and tall parents sometimes have short children.
A child’s growth could slow inexplicably, falling from the 75th percentile on the growth chart to the 20th percentile. That’s not supposed to happen in prepubescent children; usually a child follows a predictable pattern of growth.
On the flip side, a child who is short now may grow more later.
Doctors think they can predict how tall a child will be from the so-called bone age, taken from an X-ray of the left hand, and the child’s current height. For example, if a child’s bone development is deemed younger than the child, the child is behind in growth.
The other half of the growth equation is figuring out how tall a child “should be.” Doctors have another rule of thumb to figure the genetic potential of a child: Add the parents’ heights together, add about 5 inches (13 centimeters to be exact) for boys or subtract the same for girls, and divide by 2.
For some advocates, this guessing game is not meant to be played. “What is `should be’?” fumes Jeremy Rifkin, president of the Foundation on Economic Trends, a self-proclaimed watchdog of biogenetics since 1977. “Why is the doctor in the business of defining `should be’?”
Rifkin, whose foundation has sued the NIH to stop its study on the grounds it poses a health risk, says the NIH is effectively classifying shortness as a disease, and using genetic engineering as the cure.
The NIH contends that it needs to find out if the drug works because it’s already being prescribed for healthy children, and the demand is expected to grow.
“We don’t know what effect this has,” says Michaela Richardson, spokeswoman for the NIH’s National Institute of Child Health and Human Development, which is running the study.
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The NIH also argues the study is necessary to determine whether the drug has long-term side effects, another question that remains unanswered. The Food and Drug Administration, which approved the synthetic drug in 1985 for use in hormone-deficient children, supports the study, Richardson says.