Cost of deferring

It was hard for me to understand why I had to be subjected to all this medical interference when I was quite healthy

By I.B.

In 1983, at the age of 11, I was put on the hormone treatment to stunt my growth, which lasted for 2 ½ years. I had always been tall for my age, and had never felt this to be a disadvantage. In fact I liked being tall and was quite happy to think that I would probably grow to be at least as tall as my mother, who is 5’9”.

The first inkling I had that some adults may have regarded my tallness as a “problem” occurred when I was in Grade 6. The principal at my primary school commented on my height to my class teacher, without actually speaking to me directly. Soon afterwards, my mother told me that the principal had recommended that my parents take me to be assessed by Professor Henry Burger for a “treatment” which was to prevent girls from becoming “too tall”! Apparently his own two daughters had been to see Professor Burger, but as their estimated heights were deemed to be “acceptable”, they were not treated.

The idea of any “treatment” to stunt my growth made me very uneasy, and as it later turned out, this was justified. I don’t think it ever would have occurred to my parents to do anything about my height, had the principal not promoted the treatment to them. However my mother had now been convinced that the treatment was necessary to prevent me from developing a complex about my height. Hence I was unwillingly dragged off to see Professor Burger at the Prince Henry’s Institute of Medical Research. My younger sister, also tall for her age, came as well, but at that stage she was considered too young for the treatment.

I recall the experience as being unpleasant and frightening. The Medical Research Institute was not a place for children, and the staff were not particularly friendly to an 11 year old who was taller than many adult women and who was no longer cute.

On the other hand, I wasn’t treated like an adult or a teenager either. The doctor didn’t speak to me, except to tell me where to sit, stand or lie when I was being examined, and all his questions were directed at my parents. Clearly, I was not considered to be intelligent enough to answer questions about myself or to understand what was going on.

I was measured, weighed and examined for signs of pubertal development, and then had my wrist x-rayed. I recall saying to the doctor that I had imagined the treatment involved some kind of macabre contraption. To my dismay he laughed and said that indeed they did have such a device. This was not reassuring. It was hard for me to understand why I had to be subjected to all this medical interference when I was quite healthy.

A few months later I was taken back for the second appointment, which I remember very clearly. Once again I was weighed, measured and examined. The doctor then proceeded to discuss me with my parents in a clinical manner, whilst ignoring me completely. He stated that as I was at an early stage of puberty I would grow much taller if not treated, and that he predicted that my mature height would be 6’.

He then briefly mentioned the disadvantages of being a tall teenage girl, such as “getting boyfriends”. He described the treatment, which involved taking 1 tablet of ethinyloestradiol each day and a tablet of norethisterone for the first seven days of each month. The treatment would stunt my growth by accelerating puberty and causing the epiphyses to fuse at an earlier age. No possible side effects were mentioned. He did not ask me or my parents to decide whether or not I was to have the treatment, the implication was that I should have it.

By this stage I was really upset and had been crying throughout most of the discussion. The doctor and my parents ignored this. The doctor reassured my parents that they would not incur any out of pocket expenses for the consultations, and started to write out a prescription for the tablets. It was at this point that I blurted out that I hadn’t actually said that I wanted to have the treatment. There was a silence. The doctor looked up at me, and said something like “Well do you?” - the first time he had spoken to me directly. Feeling very intimidated by this, and receiving no support from my parents, I just mumbled “OK” and that was it. I was now officially on the treatment whether I liked it or not. My parents had deferred to the doctor’s opinion, as they belonged to a generation which did not question the authority of doctors. I had not been allowed to make the decision for myself, as I was considered be too immature and not intelligent enough. Afterwards, I questioned my mother about the doctor’s decision. She rejected my suggestion that we should get a second opinion. I asked her why I had to have the treatment at all, and her response was that I would not be able to wear high heels if I was too tall!

It didn’t seem to matter that I did not want to have my growth stunted. I was young for my age emotionally, and did not want to be forced into womanhood at an earlier age, but I was too young to be assertive with my parents or the doctor.

My mother reminded me every day to take the pills, and soon it became a habit. Nobody outside my immediate family was told that I was having the treatment, I felt as though it was somehow shameful and didn’t want anyone else to know.

After a few weeks on the treatment I had my first period, which was really just a “withdrawal bleed” induced by the synthetic hormones. I was still in primary school and as none of my friends had had their first period, I felt too embarrassed to talk to anyone my age about it. Initially I was quite ignorant and fearful about menstruation as it was a taboo subject in our household. I felt that periods and the physical changes of puberty were shameful, so it was hard to cope with having puberty forced onto me twice as fast as nature intended.

My periods were heavy and prolonged. When I complained to my mother about this she told me that this was normal and I would just have to get used to it, but I suspected that it had something to do with the treatment.

After about six months on the treatment I had put on a lot of weight, so that I was no longer just tall, but now big as well. I recall receiving many negative comments about my weight from adults as well as teasing from children at school.

By then I was in Year Seven, and was influenced by adolescent preoccupations with boys, clothes and physical appearance. The most popular girls at school had skinny, boyish figures and some of them ate very little to maintain this appearance. Before the treatment, I had never worried about how I looked, but now I felt that I was fat and unattractive. I was disgusted by the fat on my thighs and stomach, and became determined to lose weight and regain my childish body.

For almost one year, my existence became focussed on losing weight. I began skipping meals and started counting calories obsessively. My eating became more and more restrictive until I was surviving on only a few hundred calories per day. Naturally, I was constantly hungry, tired and physically weak. I had so little energy just climbing stairs was a great effort, but I still forced myself to exercise.

At school I became very quiet and withdrawn, and lost interest in normal activities as I didn’t have the energy for them. A teacher told me she was concerned about this, but she didn’t guess what the reason was. At that time it didn’t occur to anyone that a twelve year old could have an eating disorder, so nobody ever tried to stop me from starving myself.
During this time I recall that my periods became even heavier, and I often experienced episodes of “flooding”, with huge clots, causing my clothes to become soaked in blood. I was not well-equipped to handle this, and found it humiliating, becoming even more withdrawn as a result. I did not report the problem to the doctor, as I was too embarrassed to discuss it with my mother, let alone anyone else. She never realised the extent of the problem, because I went to great lengths to hide it, which involved washing my clothes in secret before she came home from work.

Eventually I had had enough of all this and I told my mother that I wanted to stop taking the pills. She disapproved and told me not to just stop taking the pills, as this might cause some harm, and that I would have to see Professor Burger first and come off them gradually. I obediently continued to take the pills every day.

At the next appointment with Professor Burger my mother said nothing about my request. Not surprisingly, I was very intimidated by him and I could not say anything about my wish to cease the treatment. It didn’t help that there was another doctor there, visiting from overseas, who was observing everything. I also recall that I was in the middle of yet another horrendous period, which had stained my jeans, and was afraid that this might be discovered. Thankfully, there was no examination that day.

After several months of obsessive dieting, I had lost a considerable amount of weight. In normal circumstances puberty is delayed by strict dieting, but this was an artificially imposed puberty, and I had continued to develop despite starving myself. Not surprisingly my breasts were very small, as I had not been taking in enough nourishment for them to grow.

I slowly began to eat normally again, but by then it was too late, I did not develop any further. I was almost thirteen and had stopped growing, reaching a height of 173 cm (5’8’). However, I continued on the treatment for another year, after which finally Professor Burger advised that I could finally stop taking the pills, without any gradual reduction in dosage.

Soon after I started at a new school, which was much better as it was for girls only, there was a uniform and appearances were not so important. I never starved myself again, and my periods became normal once the treatment ceased.

I stayed flat chested all throughout high school, and it was not until I had finished school that I accepted that my breasts were definitely not going to grow any larger, and started to think that there may be a connection between the treatment and their inadequate size. None of my female relatives have small breasts, rather the opposite is true, and as I have a large build my breasts are out of proportion to my body.

At the age of 18 I still looked like a thirteen year old, not a grown woman.. I began to feel that I had been cheated of the natural process of becoming a woman, and in fact felt that I was not a “proper” woman at all. The resulting depression and poor body image has affected my entire adult life.
I went back to Professor Burger and not surprisingly, perhaps, he dismissed my concern that the treatment had had a negative effect on my development. I was stunned to hear that according to his records my predicted height had been 179.4cm (5’10 ½”), so the treatment had only reduced my final height by 6 cm. No doubt he did not remember the first appointment as well as my parents and I did, when he had told us that I would be 6’ (183 cm) tall.

Feeling disillusioned, I decided that I would have to investigate this treatment myself. I then discovered that considerable weight gain and menorrhagia (heavy periods) were common side effects of the treatment, due to the massive doses of synthetic oestrogens that were prescribed; and that the long-term effects of the treatment are unknown. In at least two of the articles I found, it was mentioned that other girls treated had complained spontaneously about small breasts.

I became angry that I had been subjected to this cruel and unnecessary treatment, which had caused me needless suffering as a child and had probably harmed my development. The authors of the articles stated that they only treated girls who had serious concerns about their height, that they fully informed the girls about possible side effects, and that the treatment only went ahead if full consent was given by the patient herself as well as the parents. I wondered if my own experience was an aberration and I had just been very unlucky.

By contacting Tall Girls Inc, I now realise that I am not alone in that many others have also suffered as a result of this treatment. I am very grateful for the existence of Tall Girls Inc, and of what the group has achieved.

It is wonderful that finally a study is being undertaken to determine the long-term effects this treatment has had on us. I hope that the research will lead to an increased awareness of this treatment in the wider medical profession, and of the importance of high ethical standards in relation to the medical treatment of children. I also hope that in future doctors will be extremely reluctant to subject any healthy child to unnecessary medical treatment.

The growth and development of a child is an incredibly complex feat of nature, of which much is still unknown, and the medical profession should be wise enough to leave healthy children well alone.

Written for Tall Girls Inc. Newsletter in 2001