At 9 months, Jennifer Chambers's daughter Calliope started dropping off the growth charts. At 17 months, Calli had just five teeth, and the soft spot on her head was still open. Jennifer got comprehensive testing for Calli, and her daughter was diagnosed with a growth-hormone deficiency at age 2. Since Calli's diagnosis more than two years ago, she's been successfully treated with six-day-a-week shots of growth hormone. In Calli's case, it was clear she had a growth-hormone deficiency, but the solution isn't always as obvious.
Defining Growth Issues
According to the Nemours Foundation, "Some children who are under the 3rd percentile or over the 97th percentile, or who are growing a lot slower or faster than most other kids, may have a growth problem." Dr. Steven Dowshen, chief medical editor for KidsHealth.org and a pediatric endocrinologist for Nemours, says that kids with growth-hormone deficiency are often short, they grow at a slower rate than other kids, and they fall even further behind other kids.
Growth-hormone therapy is the accepted treatment for children who have growth-hormone deficiencies, and this treatment is usually covered by insurance. However, not all short children have a growth-hormone deficiency. Instead, some kids fall into the category of idiopathic short stature (ISS).
The International Journal of Pediatric Endocrinology "statistically defines [ISS] as height less than –2 standard deviations (SD) of the age- and sex-matched population as evident by a complete evaluation by a pediatric endocrinologist including stimulated-GH levels." Or, as the Magic Foundation—an organization for growth-related disorders—says, idiopathic short stature "is a big name to describe children who are short with no known cause."
According to the Journal, "Since unlimited supplies of [recombinant human growth hormone (rhGH)] became available beginning in 1985, the definition of [growth hormone deficiency] has been greatly liberalized and has led to the inclusion and rhGH treatment of countless numbers of normal short children." In addition, the FDA approved the use of rhGH for ISS treatment in 2003. Wider availability of growth hormone and a looser definition of deficiency have created a greater market for treatment.
"There are parents now who are bringing kids in who have already been told by their primary-care physicians or pediatricians that their child probably doesn't have growth-hormone deficiency but that the child might benefit from being treated with growth hormone anyway," Dowshen says. "In the U.S., the FDA has approved the use of growth hormone for otherwise normal short children—they've approved growth-hormone therapy for boys who aren't projected to make it to an adult height of five-foot-four and for girls who aren't going to make it to four-foot-eleven. The FDA has approved use of growth hormone for those kids; however, that doesn't necessarily mean that insurance companies are going to pay for that therapy. It's controversial."
Getting to "Normal"
So who determines what is too tall, too short, and just right?
"Society has tremendous impact on some of the things we do," Dowshen says. "When I was practicing 25 years ago, we used to see a lot of parents bringing in their tall daughters; they wanted us to shut off their growth to end up shorter than they would otherwise. In the last several years, I haven't seen a single one. Now being tall as a female is not considered a negative as it was then."
Just as parents 30 years ago were concerned about their daughters being too tall, today's parents are focused on their sons being tall enough. "We see many more boys who end up being referred to endocrinologists, and it's obviously not that there are more short boys than short girls, but that there is more psychosocial concern about height for boys," Dowshen says.
Susan Cohen, coauthor of Normal at Any Cost: Tall Girls, Short Boys, and the Medical Industry's Quest to Manipulate Height, concurs. "There have always been cultural factors at play here," she says, adding, "The interesting cultural shift is that, at one time, tall girls were given these massive doses of estrogen to keep them shorter. Then suddenly, when the culture changed—Title IX opened up athletics for girls; career possibilities opened up for girls—they were brought to growth clinics to make them taller instead of shorter."
This is not to underplay the very real effects that short stature can have on a child. "We're not saying it isn't hard to be a short boy, especially, and they probably do get teased more," Cohen notes. "The question is whether years of an incredibly expensive and potent medicine is the answer for that. Is that actually telling a child that the bullies and the teasers are right?"
Dowshen agrees: "When we tell a child they will have to get daily shots of hormones to be 'normal' later on, it may have a negative effect on the child's self-esteem and feelings of normalcy. We may be sending a message to a child who is otherwise normal that he or she is abnormal."
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