Since my 3-year-old son is shorter than 99 percent of boys his age, the doctor recommended growth hormones. Here’s what I discovered about the therapy.

By Christopher Dale
July 11, 2019
Emma Darvick

"He's in the 1 percent range," my wife reported.

Though our 3-year-old son Nicholas is certainly bright, I knew she wasn't referencing his IQ. No, Nicholas is one in 100 for a less fortunate reason: At 33½ inches tall and 26 pounds, he's smaller than over 99 percent of boys his age.

"She brought up growth hormones," she continued.

Cue parental paranoia. A flurry of Googling and link sharing ensued as my wife and I wandered down a cyber rabbit hole—familiar surroundings for any medically alarmed mom or dad.

We uncovered the baseline facts: In 2003, the FDA approved a synthetic human growth hormone (GH) for idiopathic short stature (ISS), a term describing children who are short for no known cause. (An estimated 500,000 kids in the U.S. meet qualifying criteria for potential treatment and studies show it certainly can increase their adult height.) The same drug is used to treat children with other conditions related to short stature, including growth hormone deficiency and Turner Syndrome.

There’s a lot for parents to consider, especially since besides being expensive, GH shots won’t help in every case despite daily injections and regular endocrinologist visits. Varying reasons for treatment lead to wide-ranging success rates, with more exacting models for predicting GH therapy’s effectiveness continuously being improved.

Here are five factors to think about when considering growth hormone therapy for your tiny tot—with insight from actual doctors and accredited sources rather than a distraught dad.

Is there growth hormone deficiency?

Though synthetic-sounding, growth hormone is a natural bodily substance produced in the pituitary gland, which is located in the brain.

"In any scenario where growth hormones become an option, the first action is determining whether the child has a clinical growth hormone deficiency, as opposed to being at the bottom of the growth chart organically," says Sarah Nielsen, M.D., a pediatrician at Verona Pediatrics in Verona, New Jersey. In other words, there's a difference between being naturally small and un-naturally small.

If GH stimulation testing reveals inadequate levels of growth hormone, says Dr. Nielsen, "then intervention becomes a far easier choice."

Elizabeth Burtman, M.D., of Pediatric Endocrinology Associates in Tenafly, New Jersey agrees. "Being significantly below average in growth hormone levels is just like being deficient in any hormone, and therapy becomes a fairly obvious choice,” says Dr. Burtman, who is double board certified in pediatric endocrinology and pediatrics.

It also makes it far likelier that the treatment will be covered by health insurance—a key factor as treatment can cost tens of thousands of dollars a year. According to Dr. Burtman, due in part to the imperfections of GH testing and the cost of the treatment, there are other criteria that usually must be met for insurers to cover the therapy, including a child's likely "potential height" pitted against his parents' height.

Dr. Nielsen also notes that it isn't just the tiniest tots who should be tested for sufficient GH levels. "If a child is in the 50th percentile for a while, but then suddenly slips into the 20th, that's a potential red flag of a compromised GH level," she says.

In Nicholas' case, his growth curve is normal from a consistency standpoint, reassuring on one level, but also adding to concerns that he'll be substantially smaller than his peers forever.

Family height history

If your child's GH levels are normal, deciding whether to pursue growth hormone therapy becomes a bit more complicated. Not surprisingly, among the factors that come into play is family height history.

"What we try to determine is whether the child is growing to his or her full height potential," says Dr. Nielsen. "Obviously if a child's parents and grandparents are on the small side, the likelihood he'll be short is higher. Ethnicity is also a consideration." My wife and I are a mixed bag here: I'm 6-foot-tall and Caucasian, while my wife is a towering 4-foot-11 and Chinese. And since Nicholas is an only child, there are no siblings for useful comparison.

"Family is a factor, but not the factor," says Dr. Burtman. "There's so much variability within families that it simply can't provide a slam-dunk answer."

So unless it's abundantly clear that uber-smallness aligns with family history, says Dr. Nielsen, what becomes advisable at this point is a bone age study, an X-Ray of the child's growth plates, which are softer bones consisting of special cells responsible for growth. This is intended to provide an educated approximation of adult height.

But as with GH stimulation testing, we run again into the challenge of the testing itself being imperfect. "Bone age studies can differ in terms of their accuracy. Reading them is as much an art as a science, with some subjectivity involved," says Dr. Burtman. "It's really just another tool but shouldn't be relied upon as the sole determining factor."

How short is too short?

When it comes to matters of size, gender tends to matter. "Studies have shown that shorter men have a harder time finding a partner or performing well on a job interview," says Dr. Nielsen. "It shouldn't be the case, but that's the society in which we live."

It's true: Research has revealed a litany of challenges shorter men face. Depending on the severity, I fear Nicholas’ shortness could be a significant hindrance socially and professionally.

The downsides of shortness are, typically, less harrowing for women, which is why boys are two to three times more likely to receive growth hormone therapy than girls. Though understandable, the concern here is being too cavalier with a small girl, to the point where a true GH deficiency goes ignored.

"If I see 10 patients in a day, seven or eight of them are usually boys," says Dr. Burtman. "Though it's easy to dismiss shortness in women as less of a long-term social inconvenience, it's best to at least have preliminary tests performed for all children in the third percentile of growth or lower."

From there, according to Dr. Burtman, a child's rate of growth must also be monitored. "Growing less than two inches per year before puberty, and less than three inches per year in puberty, is considered less-than-normal growth and should be explored,” she says.

Mental health issues

Psychological factors may come into play. According to a 2014 study led by Emily C. Walvoord, M.D., a professor of clinical pediatrics at the Indiana University School of Medicine, short but healthy children may become more depressed and withdrawn than peers the same height who do not undergo growth hormone therapy.

"Daily injections, frequent clinic visits, and repeated discussions about height might exacerbate instead of improve psychosocial concerns in children with idiopathic short stature who are otherwise healthy, and give them no cognitive improvements," lead author Dr. Walvoord said in a statement.

A child's proclivity for depression or anxiety is made higher when close relatives have similar maladies. For Nicholas, the child of a clinically depressed recovering alcoholic with an anxiety disorder (me), this may provide particular pause in our decision-making.

Dr. Burtman sees adverse psychological effects as the exception rather than the rule. "A small percentage of children who are treated may show some emotional sensitivity to it, but for kids who gain height the process can certainly add confidence and self-esteem,” she adds.

Potential side effects and long-term risks

According to Cincinnati Children's Hospital, side effects from GH treatment are rare but, like the effectiveness of the therapy itself, run a range of potency. For one, headaches can occur as a result of increased pressure on the brain.

Accelerated growth also can cause a hip problem called slipped capital femoral epiphysis, in which the upper part of the thighbone shifts. This can cause considerable knee or hip pain, is often accompanied by a limp, and may need surgery to correct.

Due to its relative newness, less is known about the long-term risks of GH therapy. But there is concern it may increase the risk of stroke and bone and bladder cancer. Yet, according to Dr. Burtman, these risks are only slightly higher compared to the general population.

And overall, Dr. Burtman thinks a parent's intuition can be a useful tool in topics as potentially subjective as short stature and growth hormone therapy.

"If the parent feels there's something wrong, and the pediatrician doesn't agree, parents should press the issue," says Burtman. "In my experience parents really do know best in these gut feeling situations."

As for Nicholas, the two-person jury of my wife and I is still out. We haven’t had him officially tested for GH deficiency yet; should that show a measurable lack of growth hormone, we will certainly move forward with therapy.

If it doesn’t…well, we’ll see. Nicholas is only 3, meaning we have time to conduct our own research and, hopefully, wait for a game-changing growth spurt. Whatever we decide, it will add another shade of gray to the seldom black-and-white duties of childrearing.

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