I was medically experimented on for half of my childhood. It’s a long story, and it can’t be told in one short essay. But I’ll share a piece of it with you now. When I was a child, in my family at least, doctors were akin to gods. If our doctor said to do it, my parents did it – and did it very thoroughly indeed. In the experiment on me, my body was altered in ways that cannot be undone. However, I can heal my psyche, a long process that both led to and has grown from writing the book I’m working on, The Experiment Is on Us. Experimentation is the only way medicine advances, so we need it. The challenge is doing it thoughtfully, ethically, and better than we have done in the past.
My story began in 1970: I was wearing knee socks and cotton dresses, as pants weren’t approved for public school girls in my California city for another two years. I was a happy, innocent kid. My mother needed some medical help regulating her blood sugar, which tended to run low. Her doctor, Roberto F. Escamilla, was trained at Harvard. He became a famous endocrinologist with a private practice and his own laboratory. For decades, he was an esteemed professor at the University of California San Francisco.
Dr. Escamilla gave my mother common sense dietary advice – frequent snacks, avoiding sugar, plenty of protein. As luck would have it, though, he specialized in what had become a medical fad popular with parents in the 1970s: engineering the height of children. The fad was primarily for social reasons. If a girl grew up to be on the short or tall end of her peer group, maybe it would adversely affect her prospects, including for romance and marriage.
And so it was that I fell into the hands of a doctor who gave me powerful drugs to try to engineer my height. I wasn’t even particularly short for my age; my problem was that I was shorter than my sister, who was a year younger. As Dr. Escamilla wrote in 1954, in an editorial entitled “Stimulation of Growth in Short Children”, this state of affairs would result “in psychologic problems in the home.” In the 1950s, he prescribed thyroid and methyltestosterone to both boys and girls to try to make them taller. In boys, he watched out for gynomastia (enlarged breast tissue) and in girls, he watched out for virilism, which he described as hair growth on the upper lip, huskiness of the voice, and prominence of the clitoris. In other words, his treatment was at risk of damaging children’s normal sexual development. Fortunately, he didn’t give me methyltestosterone. I’m imagining he had already damaged enough kids that he quit using it for that purpose. Instead, he gave me a high dose of thyroid along with a progesterone drug that has been flagged for increasing reproductive cancer risk.
What did this accomplish? Did I shoot up in height? No. But I did become very skinny and, to hear my mother tell it, very speedy. I couldn’t sleep. She began to call me “hyper”, a label I grew to loathe. I had very little body fat, so little in fact that as an adult I learned I had the body fat of a lean man. When all of the other girls were going through puberty, what was happening to me was…nothing. I didn’t have the body fat necessary for puberty. It was humiliating, as these were the days of junior high school gym class, mandatory showers with no stalls or curtains, and small, dingy school-issued towels. By ninth grade, all the girls were growing breasts. Except for me.
Dr. Escamilla’s specialty was endocrine disorders, including growth disorders, and for years he ran the San Francisco Pituitary Bank. For this bank, he needed many pituitary glands, which were used to make human growth hormone. Pituitary glands are tiny, delicate, and sit right in the middle of our heads. There is no way to extract them without digging into the human head and destroying other tissues. He gave thank you bottles of whiskey to mortuary directors at Christmas to thank them for their services. This practice went on for quite a while, until it was discovered that some very unlucky patients receiving human growth hormone had developed a degenerative, fatal brain condition, Creutzfeldt-Jakob Disease. And so that particular way of manufacturing human growth hormone came to an end.
My failure to reach puberty naturally is just a sliver of a larger story. In the larger story, there was no part of my body that didn’t belong to Dr. Escamilla. He put radiation into my bones and he got between my legs. I don’t think he was malicious in his intentions, but he did what he wanted when and as he wanted. For the most part he did it without even looking me in the eye. The one time he asked my opinion, he immediately disregarded it. I share this because of what it tells us about the highly paternalistic state of medicine back then.
What matters to me is that kids didn’t have a voice in what was done to their bodies. And even though medical ethics have progressed a great deal since the 1970s, kids still don’t have much of a voice. I’m a parent and I know how important it is for children to trust the people who provide their medical care. Building this relationship of trust needs to start when our children are young and be carefully nurtured so kids and the adults they become feel safe in the hands of caregivers.
Every violation of trust matters a great deal, just as every positive relationship between a medical provider and patient matters a great deal. I have worked hard to build positive relationships with my care providers. I need extra communication, true informed consent, and a sense of partnership around my medical care. I believe it is something we build, step by step, in partnership with our providers. I wish it for each of you.