“What’s wrong with being tall?”
Sandy Allen, the world’s tallest woman at 7 feet 7 1/4 inches, has a right to be indignant.
Until this interview, she had never heard of girls being treated with high doses of estrogen–as much as 10 times the amount in a birth-control pill–in order to suppress growth.
Allen, 47, was well over 6 feet when she was 10. That’s when her family doctor sent her to the Riley Hospital for Children in Indianapolis, where she was poked and prodded and placed in front of a lecture hall full of doctors and medical students.
“I can recall that they came up with the idea that they wanted me to undergo some sort of experimental treatments to try to retard my growth. And even though I was only 10, I refused, flatly refused. I wasn’t going to be a guinea pig for anybody,” Allen said.
Dr. Neal Barnard, president of the Physicians Committee for Responsible Medicine in Washington, D.C., wrote of estrogens in a recently released study, “Their use for arresting growth in tall girls was first suggested in the 1940s, but concerns about effects on fertility delayed clinical tests until 1956.” That’s when Dr. Max Goldzieher published in the Journal of Clinical Endocrinology the results of having treated 14 girls, ages 9 through 16, who were at least 168 centimeters tall.
That’s 5 foot 6.
The girls Goldzieher treated were at least 10 centimeters, or about 4 inches, taller than the average height for their age.
Allen was nearing 6 foot 5 when she made the trip from her childhood home of Shelbyville, Ind., to Indianapolis in 1965. High-dose estrogen treatments were hitting their stride, and given her age and height, she would have been a prime candidate.
“It’s possible that this is what they had in mind for me,” Allen said.
It’s what many doctors had in mind for a lot of young girls.
“I’m angry at the medical community for just treating us and then saying, ‘Go and live your life now,’ ” said Karen Waldvogel, 40, of Encinitas, Calif., who is slightly less than 5 foot 11.
She should be angry. High-dose estrogen treatments have been used in this country for nearly half a century, but there has never been a long-term monitoring study to assess the effects of this treatment on patients later in life.
“The longest follow-up that has ever been done is 10 years, and yet all of the serious risks of [this treatment] would be expected to occur after that 10-year period. I’m speaking of infertility or hormone-related cancer, something like that,” Barnard said.
In the absence of any formal follow-up, women who were treated with estrogen in their youth have been finding each other and sharing their stories. Their tales paint a frightening portrait.
“I don’t call them miscarriages,” Waldvogel said. “One was stillborn and two were born alive. They died in my arms. Those aren’t miscarriages. We’ve got birth certificates and death certificates. That’s not a miscarriage.”
She added, “I attribute my problems to [high-dose estrogen], definitely, because I don’t feel like I’m alone.”
She’s not. Many women–1 in 3 according to Tall Girls Inc., an Australian group gathering data on women who were given high-dose estrogen–report fertility problems, and 1 in 5 reports miscarriages. Between Waldvogel and two other women she knows who were treated, 10 children have been lost.
Happily, two years ago, Waldvogel and her husband, who is 5 foot 10, had a little girl. “She’s wonderful,” Waldvogel said. “She’s our miracle baby.”
Dr. Naomi Neufeld, attending pediatrician at Cedars-Sinai Medical Center in Los Angeles, can recall treating two cases of tall stature in her medical career. She said, “Frankly, no one treats it anymore.”
But the study authored by Barnard revealed a startling fact.
“We were surprised to find that 1 in every 3 pediatric endocrinologists practicing in this country willingly prescribes this treatment on demand, despite the fact that we have no evidence regarding its safety as it’s used. It’s high doses, long-term. Those would be red flags for anybody prescribing it, and yet it’s still done,” Barnard said.
Worse, despite the disconcerting medical histories of past patients, “there isn’t any formal procedure [for following patients today], and that’s what should be done,” Barnard said.
To their credit, many pediatric endocrinologists who have treated girls in the past, including Dr. Barry Rich, associate professor of clinical pediatrics for La Rabida Children’s Hospital and Research Center in Chicago, now approach the idea with reservation.
“Someone would have to have an extreme reason for me to even consider it anymore,” Rich said. “If it’s going to be effective at all, you want to start it when they’re starting to go into puberty but before they’ve achieved menstruation, because normally after menstruation occurs, there’s only maybe 3 inches of growing to go. . . . So you’re talking about giving this medication to 11-year-old girls.”
At that age, most girls aren’t able to make an informed decision about whether they want this treatment.
“Sometimes you’re treating the family’s perceptions, not the child’s. You have a mother who was very tall and was very unhappy and doesn’t want her daughter to go through the same thing,” Rich said.
But times have changed. Being tall doesn’t carry the stigma it may have in the past. In an age of models who make millions and women’s professional basketball, being tall has its advantages.
So though the parents may mean well, in their fervor to “spare” their child the curses of height, they may miss another serious side effect.
“Going through [treatment] forces you into womanhood, for lack of a better word,” Waldvogel said. “I wasn’t prepared for that. I was a tomboy. I did not want to become a ‘young woman.’ Nobody ever talked to me about that stuff. There’s this whole step that nobody ever thinks about.”
With so much at stake, Barnard, on behalf of the Physicians Committee for Responsible Medicine, has petitioned the Food and Drug Administration “to change the language in the prescribing information that goes both to doctors and to patients so it acknowledges that this is not an approved use of the drug. It’s legal to do, but it’s not an approved use. . . . “
Additionally, he would like to see a long-term monitoring of girls who were treated and are now adults.
It would not be an effortless task, but it’s a task that must be taken on. “These patients get lost,” Neufeld said. “Maybe a national campaign to identify those women? That would be a good thing. That would be a very good thing.”
Bottom line: Is there a medical basis for suppressing a girl’s height? Simply put, no.
“It’s really a cosmetic treatment,” Rich said. “And the amount of growth you save is actually fairly small in most circumstances.”
Life is good at any elevation
“I don’t mind being tall,” said Sandy Allen, whose life is chronicled in “Cast a Giant Shadow,” available through www.sandysbook.com. “Sure, it posed a few problems but nothing I couldn’t live with.”
Allen was an average-size baby born into an average-size family, but a tumor putting pressure on her pituitary gland caused it to overproduce growth hormone, and she didn’t stop growing until she was more than 7 feet tall.
“You learn to live with it,” she said. “You work your way around it. You learn how to sew!”
But for all the challenges she faced, her philosophy in life is simple: Treat others the way you want to be treated, and it’s OK to be different.
— B.K.
