Nov. 21, 2014 -- Melissa Chapman started looking into growth hormones for her 9-year-old son, Jackson, after he visited an amusement park with his cousin last summer.
Jackson was often turned away from rides after he fell short of the signs that say “you must be this tall.” His younger cousin, however, cleared them with ease.
“I don’t want him to feel like he’s not as good as anyone else -- that he’s not as special as anyone else, that he doesn’t have the same opportunities,” says Chapman, who lives in Staten Island, NY.
Even though Jackson is confident and outgoing and has never complained about his size, his parents recently took him to two specialists to see if he might be a good candidate for growth hormone shots that might add a few inches to his height.
“I think he’s going to go through puberty, and he’s going to be more aware of it, and it’s just going to kill me,” she says.
In 2003, the FDA approved synthetic human growth hormones for kids who are healthy and not low in growth hormone but might wind up shorter than 97% of their peers -- a condition termed idiopathic short stature.
As a result, an estimated 500,000 kids in the U.S. now qualify for the shots. That has sent a growing number of worried parents to doctors to weigh the pros and cons of the daily injections, which are expensive and won’t help in every case.
“Definitely we see more families coming in specifically saying they’re here for growth hormone, and we just have to say, ‘Wait a minute, let’s discuss what’s going on,’” says Laurie Cohen, MD, a pediatric endocrinologist at Boston Children’s Hospital.
“Parents are concerned about what it means to be short,” Cohen says.
Is Being Taller Better?
Studies have found that a soaring stature has definite social advantages. Taller men and women have higher salaries. Several studies have found that height is a priority for men and women when they are choosing their mate. And people seem to prefer tall leaders to short ones.
Given all the perks of being tall, you might think kids who end up significantly shorter than their peers might wind up feeling inferior and isolated. But studies have also shown that’s not the case.
Research has shown that short kids who grow into short adults get along just as well as their normal-height peers.
“Most short kids do just fine,” says David Allen, MD, a pediatric endocrinologist at the University of Wisconsin School of Medicine.
“They’re well-adjusted, they’re not psychologically disabled, and it’s more of a concern for parents than it is for the child,” he says.
That said, there are circumstances when being short can be a risk. Take driving and cars: Many safety features in cars, like air bags and seat belts, are designed for people within certain height ranges. Drivers under 5 feet tall are more likely to be injured or killed by their air bags than those who are taller because they pull their seats forward, putting them too close to the devices.
“I do have a few patients where I’m extremely concerned about the possibility of disabling short adult height,” Allen says. In those cases, he says he has no trouble prescribing growth hormones. But Allen says he uses them sparingly for most others.
“My experience has been that as soon as we start to talk about things that we don’t know for sure, like the long-term side effects, many families, at that point are like, ‘You know, we’re not very interested,’” he says.
What Are the Risks?
Growth hormones seem to be safe, at least for the first few years. But less is known about risks that may persist into adulthood.
A recent study in the journal Neurology found a strong tie between growth hormone treatment in childhood and the risk of having a stroke as an adult. The study tracked nearly 7,000 children who were short but otherwise healthy and treated with growth hormones. They were followed to an average age of 28. There were 11 strokes during the study, about twice as many as researchers would have expected. Four of them were fatal. Strokes that cause bleeding in the brain (called hemorrhagic strokes) seemed to be a particular risk. There were about seven times as many in the growth hormone group.
A 2012 study by the same group of researchers found that kids with short stature treated with growth hormones, whether or not they had growth hormone deficiency, had a higher risk of early death as adults. The increased risk seemed to be driven by greater numbers of bone cancers and bleeding in the brain.
And growth hormones may raise a child’s risk for type 2 diabetes. A study published in 2000 in the Lancet, which reviewed records of more than 23,000 kids treated with growth hormones for an average of 3 years, found that 18 developed type 2 diabetes, about six times as many as researchers expected.
But perhaps the biggest risk in starting treatment with growth hormones is a psychological one.
“One of the biggest side effects, if you start treating someone who’s short, maybe you’ll make them less short -- but you’ve also now told them that there’s something wrong with being short,” Cohen says.
Chapman worries about that for Jackson, too.
“He’s really confident and happy,” she says. “I don’t want to make this an issue for him. I don’t want to make this the focal point of his life.”
“It’s such a hard thing to decide,” says Chapman, who wrote about the issue on her blog, TheStatenislandfamily.com.
A Few Extra Inches for a Hefty Price
How much extra height could a child get from growth hormones? Studies have shown the average gain for kids treated for about 5 1/2 years is about 2 inches.
“The average response is just the average. Half do better, half do worse,” Allen says.
Higher-dose shots may yield even bigger benefits. One study of 128 children treated at a single clinic with a slightly higher dose of growth hormone saw height gains in the range of about 3 to 4 1/2 inches.
But that growth definitely comes at a cost. The price of treatment ranges from $10,000 to $60,000 annually. That works out to a cost of about $52,000 an inch. And insurance coverage for the shots varies.
The challenge for doctors is trying to figure out which short kids will get the most help from the shots.
Kids who have short parents but who are growing at normal rates probably won’t get a whole lot of help from the shots, Cohen says, especially if blood tests also show they’re not low in growth hormone.
But other kids seem to fall off the growth curve early and may not catch up without help.
Sean Satija, of Parkland , FL, was one of them. He started growth hormone shots when he was 6, after a pediatrician alerted his parents to his slow growth.
“On the pediatrician’s chart, he wasn’t on the growth curve at all. He was way below the curve,” says his Mom, Jennifer Satija.
The pediatrician sent them to a specialist who measured hormone levels and bone growth, and took a detailed family history.
“I’m 4’11, so I’m definitely tiny. And I come from a really small family. My husband is more average at 5’11,” she says.
When their doctor ran the numbers, he projected Sean might reach 5’1” as an adult.
“Even in my tiny family, that was really small, so we started to get more concerned than we were before,” she says.
Sean was also feeling the size gap. “Kids were calling him a baby and things like that,” she says.
“He was really kind of bothered about it for a while, and then we kind of didn’t hear about it too much anymore,” she says.
When the doctor first offered them growth hormone treatments, Jennifer says she was reluctant to bring it up to her son. But when she did, she was surprised to find that he took it in stride.
“He did get on board with the idea that it sure would be nice to be the size of his classmates,” she says.
Now, after 2 years of treatment, the shots have made a big difference. Sean is still on the smaller size for his age, but he looks normal compared to his classmates.
“He doesn’t look like he skipped a grade or something,” Satija says.
She says they’ll keep doing the shots as long as Sean keeps growing.
“I’m now, for the first time, having to replace his clothes and shoes quickly,” she says. “You know, when other parents say they can’t keep their kids in pants, I’m finally seeing that.”
Insurance covered the shots for Sean, though Satija says the copay is a lot.
For families that can’t bear the costs, there may be other choices.
Allen says he sometimes uses low doses of a male sex hormone to help short kids grow faster.
Unlike growth hormones, male hormones won’t make kids taller. It helps late bloomers catch up to their friends.
“They catch up to the curve, but they end up being where they’re going to be anyway,” he says.
The price for the male sex hormone is $3,000 a year, less than one-tenth of the annual cost of growth hormone.