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No Small Thing

How to decide if kids need growth hormones

Published on: July 28, 2014

My third child, Wren, was born in Oxford, England, while we were living abroad. The birth was quick — there were no complications — and Wren was healthy. He started breastfeeding immediately and gained weight normally over his first year.

Then, around the time he turned 1, Wren stopped growing out of his clothes. His best friend rocketed past him in height, and Wren’s hair and fingernails never seemed to need cutting. I began Googling growth charts and kept a measuring tape on the changing table.

At Wren’s first physical in the U.S., our pediatrician eyeballed his chart and referred us to an endocrinologist. He explained that although height is variable at this age, it triggers an automatic referral when children are “off the chart” in either direction.

I made my way back to the Internet, where fears learn to fly, and read everything I could find about endocrine system disorders.

Non-raging hormones

Human growth hormone (HGH) is produced in the pituitary gland, an annex of the hypothalamus. Without HGH, its attending hormones and an insulin middleman, the message to grow isn’t received by bones and tissue. An HGH deficiency may be congenital or result from an injury, a syndrome or a tumor — or it may go unexplained. Another cause of small stature is constitutional growth delay (CGD), when a child’s skeletal age may be younger than her chronological age.

These deficiencies differ from most forms of dwarfism, a medical condition often associated with a mutation of the fourth chromosome. Deficiencies may be treated with a course of HGH, administered in daily injections as children grow and until their bones fuse.

When Jessica Lu’s daughter Sierra* was 6 months old, she started falling off the growth curve. Tests revealed that Sierra’s hormone levels were on the low side of normal — but her growth rate was well below average, and she was tiny. No matter where the Lus went with their daughter, “It was the first thing anyone ever [noticed],” Jessica Lu recalls.

When Sierra began school, classmates carried her around like a toddler. At age 6, she was in the .03 percentile, with a projected height of 4' 9". Her mom had practical questions for the pediatrician, including “Will she need a stool in the kitchen? Will she be in a car seat when she goes to prom?”

Sierra qualified for medically necessary hormone treatment covered by insurance. The Lus decided to begin immediately so she could receive the benefit of the hormone for the longest possible time. Jessica Lu, a psychiatrist, specializes in medication management. “I don’t like giving my kids medication, and moms always have anxiety about whatever they’re doing!” she says. Hormone intervention carries risks, and she sympathizes with the argument that size doesn’t matter. Even so, she says, “Everything around you tells you it does matter.”

When asked if short stature truly puts kids at a disadvantage, child psychologist Toni Heineman, DMH, of the University of California, San Francisco (UCSF), says: “The easiest thing to be, when you’re a kid, is average. A short person in a taller world has to work harder; the sense of power that would automatically be conferred by height, they have to grab in another way.”

The new normal for kids

Daily injections of HGH have become a bedtime ritual at the Lu household. It was difficult at first but has gotten easier; Sierra now administers the hormone herself, and her parents supervise.
Within months of beginning treatment, Sierra’s growth started turning toward the curve, and tests revealed that the amount of HGH in her blood was much higher. Today, five years later, Sierra is in the 13th percentile and approaching the height of her peers.

At UCSF’s pediatric endocrinology clinic, my son Wren’s tests revealed normal levels of growth hormone and an average rate of growth. I was relieved, but his size was still a mystery. What was the right thing to do, given the available choices?

My friends had plenty of ideas. One suggested that Wren might be angry later if I elected to do nothing. A geneticist at Genentech, one of the first companies to manufacture HGH, told me about the newer, relatively painless pinprick injections.

Many conversations at the playground start with swapping child data points, but I began each one with an apology: “He’s very short for his age.” Finally my mother took me aside and told me to stop. I realized I could take responsibility for the messages my son received about his height.

To treat or not to treat?

Hormone treatment is expensive, and the ethics of intervention vary from family to family. In cases like Sierra Lu’s, the benefits are clear and the proof is in the results. But the benefits of giving HGH injections to a child who has normal levels of the hormone in her body and is growing at an average rate are debatable. Treatment results in modest growth of 1–3 inches, and it costs about $52,000 a year. Most clinics and doctors are moving away from recommending interventions not deemed medically necessary, and insurance will not cover them.

2009 study by the International Journal of Pediatric Endocrinology notes “the absence of evidence of the psychosocial impact of short stature and the importance of discouraging the expectation that taller stature will improve quality of life.” Such conclusions contradict the height-biased messages of popular culture and are helping determine which children need treatment the most.

In the meantime, though we have not pursued treatment for Wren, who’s now 7, we continue to monitor his hormones and bone age. Despite predictors that the world will not be fair to a short man, Wren is a happy, sturdy, healthy little boy.

* Name has been changed.

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