Harris Chadwick, 13, of Reston, is the second-shortest person in his school. "Lots of times my friends will pretend like they don't see me," said Harris, who is 4 foot 3. "Then they'll say, 'Oh, there he is,' and stomp their foot down like I'm an insect or something. i don't think it's very funny."
Harris and his parents and about 40 other families are members of the Greater Washington Chapter of the Human Growth Foundation, which meets each month to discuss the causes and effects of their children's stunted growth.
For most of the children, the culprit is a malfunctioning pituitary gland. Within the anterior lobe of the pituitary gland, usually smaller than a penny and neatly tucked beneath the base of the brain, six vital hormones are synthesized like clockwork from birth to death. One of these hormones in particular dominates the conversations of the growth foundation members.
Called simply the human growth hormone, it determines how fast and how tall a child will grow, or whether the child will grow at all.
At each chapter meeting at the National Naval Medical Center in Bethesda, the children whose bodies have stopped making growth hormones meet with two social workers while their parents talk in a room nearby.
The children look normal, yet much younger than they really are. Harris Chadwick is 4 foot 3; Monica Mozon of the District, 8, is 3 foot 7; Billy Strathmann, 14, of Chevy Chase, is 4 foot 10; Jill Evans, 9, of Herndon, is 4 feet; and the group's most afflicted member, Hope Freeland of Gaithersburg, is 2 years old and weighs only 7 1/2 pounds.
Most of the children receive growth hormone injections and are growing, though at a very slow rate. Doctors tell them that in due time they should reach normal height.
Harris Chadwick, whose mother Sheila co-founded the Washington area group in October 1980, first showed signs of slow growth when he was 3. He has received growth hormone injections every other day for the past three years.
Human growth hormone, also called somatotropin, must be extracted from a pituitary gland after death from a donor. A synthetic hormone is being tested in 10 laboratories in the United States, but doctors predict it will be at least two years before a synthetic hormone becomes commercially available. Until then the natural hormone will continue to be expensive and hard to get.
"One pituitary gland yields about 10 international units of growth hormone," explained Dr. Val Abbassi, chapter co-founder and a pediatric endocrinologist at Georgetown University Hospital. "Most children require six units of growth hormone per week, and more is required for older children. So it takes about 25 pituitaries, or dead bodies, to supply one child with the hormone for a year."
"Most of the endocrinologists who treat hormone patients don't charge them," Abbassi said. "If a patient's insurance does not cover office visits, we try not to charge them." They also do not charge for the actual hormone since endocrinologists conducting research get the hormone by allocation from the nonprofit National Pituitary Agency.
Only two pharmaceutical companies in the world sell the growth hormones: The Kabi Group Inc., a Swedish company, and Serono Laboratories Inc., based in Italy. Both companies sell the hormone for about $15 per unit.
At that price it would cost an average patient about $5,000 annually to maintain normal dosages of six units a week.
Of the 2,000 children nationwide receiving hormone treatment, Abbassi said, about 100 live in the Washington area. The bond among parents of these children is strong.
The January meeting, for example, drew 24 members from throughout the region despite five inches of snow and the televising of the Super Bowl.
In addition to medical problems, parents often discuss the pain of hearing their children talk about the frustrations of abnormal shortness.
"One day my son came home crying because the teacher asked him to turn off a light and another kid rushed to do it and said my son couldn't reach the light," one parent recounted. "All my son kept saying was, 'I know I could have reached that light, I know I could have.' "
Hilda Evans of Herndon told a similar story. "My daughter came home fuming one day because a bunch of girls said, 'You're not 9 years old, there's no way you can be 9 years old.' "
Evans says her daughter has been taking growth hormone injections for only a year, but has grown 4 1/2 inches in that time. A child normally grows two inches a year.
But in the next room, as social workers Ellen Rodin and Geri Elias urge the children to explore their feelings, the stories were harsher.
Monica Mozon said she finds the cruel jokes tough to take. Her soft voice cracked as she slowly told a story she'd rather forget.
"Sometimes when I'm at school and I'm in line, the kids will step on my foot and say, 'Oh, I think I just stepped on Monica.' Then they'll pick up a rock and scare me with it."
For some of the children, however, growth retardation stems from a source other than the pituitary gland.
The most common form of dwarfism is Turner's syndrome, discovered in 1938 by Dr. Henry Turner. It afflicts 5,000 to 6,000 girls in the United States, who are born without ovaries, never go through puberty and, consequently, look like young girls all their lives.
The most physically evident form of growth retardation is achondroplasia, or bone dwarfism. One in every 40,000 children is born with the disorder, which results in extremely short stature, an abnormally large head and an exaggerated forward curve to the lower spine. No cure or treatment for achondroplasia exists.
In some cases, doctors cannot even find the cause of a problem. Hope Freeland, in her two years of life, has remained such a medical mystery.
Hope spent the first four months of her life in George Washington University Hospital, where she was born, her father Ned Freeland explained, because she had a urinary tract infection and pneumonia and had to have heart surgery when she was 16 days old. "Her inability to grow was the least of our worries," Freeland said.
Hope has gotten growth hormone injections daily for the last year and has grown three inches in that time. Doctors have no clues as to why the frail little girl will not grow on her own