In lieu of an abstract, here is a brief excerpt of the content:

  • It’s a Human Rights Issue!
  • Daniela Truffer

I was born in 1965 in Switzerland with a severe heart defect and ambiguous genitalia. The doctors couldn‘t tell if I was a girl or a boy. First they diagnosed me with CAH and an enlarged clitoris, and cut me between my legs looking for a vagina.

Because of my heart condition, the doctors assumed I would die soon. After an emergency baptism, I stayed in the hospital for three months. My mother would travel to the city as often as possible, though she was only allowed to see me through a glass window.

When I was two months old, and still in the hospital, doctors opened my abdomen and found healthy testes, which they threw in the garbage bin. According to my medical records, my parents had not provided consent. Further tests showed I am chromosomally male.

Later the “castration” was declared a “mistake”: one doctor said I was a boy with hypospadias. As they had already removed the testes, however, they would have “to continue this way and the small patient must be made a girl.”

After three months, my parents were finally allowed to take me home.

During my childhood, I spent a lot of time in doctor’s offices and hospitals, suffering countless examinations of my genitals and urethral opening. When I was two, our family doctor stuck his finger into my urethral opening; I was screaming very loud, my father says. My mother had to put me into warm water because every time I had to pee I screamed in pain. Later I was hurried to the hospital with a bad infection. Still today my urethra often hurts after going to the toilet.

I knew early in my life that I was different.

I learned fragments of the truth only after decades of ignorance and denial. I was lucky to obtain my medical records. The hospital initially told me they no longer existed. When I insisted, they eventually sent me some recent files pertaining only to care I received after I was an adult. I kept calling. Once I was put through directly to the archive, where I was told that indeed there were “lots of files on microfilm.” However, it was only when I threatened to return with a lawyer that the hospital sent me a large pile of printouts.

Finally I had it in black and white: The doctors had systematically lied to my parents, instructing them to “raise me as a girl” and never talk to me or to anyone else about “the gender issue.” Asked if I could have children, the doctors told them it was “doubtful.” At seven, the doctors still claimed it had been necessary to “remove the ovaries,” and at fourteen told me that I didn‘t menstruate because my “uterus was very small.”

Because of the castration, my bone growth was reduced. To this day, I have to deal with health problems like a ruined metabolism, recurring fatigue and vertigo, and osteopenia.

I would eventually grow older than doctors had originally predicted. At seven, they decided to operate on my heart septum and valve. I went to the hospital for preparatory cardiac catheterization. However, because of an infection, doctors put off the procedure. Since I had already been admitted, they decided to “use the opportunity to conduct the genital correction already planned in 1965,” and shortened my micropenis to the size of a “very small clitoris,” allegedly with my consent.

Fortunately they didn‘t amputate the glans, and I still have sexual feelings left. But I remember the pain and unease, and how I often ran home from [End Page 111] school crying. Today I have a lot of scar tissue, which often hurts and itches.

After a few days I was brought back to the cardiologist for the catheterization, and a few months later heart surgery. The doctors saved my life and destroyed it in the same year.

I spent my childhood in fear, isolation, and shame. When I had to see a doctor, I was always scared stiff, but I never cried, and endured everything without any protest. I felt sick days in advance, and in...

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Additional Information

ISSN
2157-1740
Print ISSN
2157-1732
Pages
pp. 111-114
Launched on MUSE
2015-08-18
Open Access
No
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