Case Study No. 4
The child was born 1999 with ambiguous genitals. In the following weeks, at the Basel University Children’s Hospital, blood, urine and other tests were conducted to establish the sex of the newborn. One day the doctors came and said that it‘s rather a girl, the next day it was a boy and so forth. The word “intersex” was never mentioned. After countless tests the doctors diagnosed a 46,XY Mixed Gonadal Dysgenesis. The doctors then insisted on genital surgery, they wanted to make a girl. After obtaining informations from the internet and meeting persons concerned, the parents cancelled the surgery a few days before the scheduled appointment. The parents raise their child as a girl, but want herself to decide later.
The mother of the person concerned tells their story:
After I had given birth to my first child, I noticed that the doctors were whispering something about a “slightly swollen genital, but it’s normal, probably the baby got to much hormones during pregnancy.” The midwife took the child for check-up to the next room. A doctor, who was there by chance, wanted to know more about the genital. The midwife could just prevent him to put a cotton stick into the child to see, if there was a vagina, and how deep it went in. Nobody seemed to have the situation under control, or knew how to act towards us. We felt completely helpless. The midwife had never seen such a child, and didn‘t know about intersex. The doctors wanted to further examine the newborn. Still dizzy because of the anaesthesia, I agreed, and so my child, my husband and the midwife left for the children’s hospital. Next was a check in the Basel University Children’s Hospital that took several weeks, blood, urine and other tests to establish the sex of the newborn.
One day the doctors came and said it’s rather a girl, the next day it was a boy and so forth. The word “intersex” was never mentioned. We couldn‘t give our child a name which wasn‘t easy for me. Family and friends called and wanted to know whether it‘s a boy or a girl. I said: I don‘t know. They thought that I was joking. I was never sad, but angry instead, because the doctors experimented around with this little innocent creature. I as well disapproved of the doctors position of power, they always came into the room in twos or threes. I didn‘t understand the technical terms they used, and I felt like an idiot. I feared that my child might be seriously ill.
During one of the countless consultations, the physicians finally told us our child is chromosomal male (XY), but shows a lot of the characteristics of a girl, for example an enlarged clitoris. They couldn’t clearly determine whether there were testes or ovaries in the abdomen. The doctors recommended to remove the gonads as soon as possible, because later there could be a cancer risk. I consented under the pressure of the doctors, it was our first child, we were afraid to lose it over cancer. I still don‘t know if this surgical intervention was necessary. Six month after birth, the doctors advised us to let our child undergo genital surgery. They wanted to make a girl. I didn‘t know at that time that there are a lot of testimonies by persons concerned who suffer from such surgeries. I just knew that this surgery isn’t right.
I continued to ask the doctors why they would want to perform surgery. They always answered the same way: A child without a clearly defined sex is socially worthless. The other children will tease and exclude it, there will be problems while exercising or swimming at school. The child has to know where it belongs to. The expression “intersex” still wasn‘t mentioned at that time. The doctors continued to insist on surgery: they wanted to shorten the enlarged clitoris, adjust the labia and construct a vagina during puberty – it had to become a girl. I wanted to know if the child would be able to have sexual sensations at all after the surgery. They hesitated, and then told me that the chances were good, but that they didn’t know for sure. Then one of the doctors said: It‘s worse for a man not being able to pee standing, than it is for a woman to have sex without feelings. It would be easier for a woman to deal with it.
I was outraged. It was a very difficult time. My husband, who until then supported the idea of a surgery, began to have doubts. Then my father began to search in the internet and found a lot of information which we gratefully absorbed. Suddenly we knew that our child is intersex, and that there are self-help groups. We contacted such a group immediately and went to a meeting, where we learned about many tragic fates, countless surgeries with bad outcomes, fears and pains. We then cancelled the surgery few days before the scheduled appointment. The doctors were almost furious with us, and called us irresponsible. What always made me angry all over these years, is the fact that every doctor wanted to look at our child‘s genitals. That‘s still the case, whether we have to go to the hospital because of a bone fracture or whatever. As soon as the doctors read the diagnosis “intersex” in the medical records, they ask: “Could we take a look at the child’s genital?”
Our child grows up as a girl, but she knows that she is a special girl and can decide for herself how she wants to live. Being intersex is no problem for our daughter. “There are boys and there are girls, and there is me,” she says. The most important thing is to constantly inform the children according to their age, and to explain intersex to the neighbourhood. The family and close friends know about our daughters particularity. Although we live in a small village where everybody knows everyone, the social exclusion predicted by the doctors didn‘t happen.
Retrospectively I can say, we were completely over-strained both because of the insecurity of the doctors and our missing know-how. But thank God we always were able to accept our child with his particularity. I think it‘s important to be honest and give her the possibility to go her own way. As a boy, a girl or none of both. We had to fight against the doctors in order to preserve the freedom of choice for our child. I am happy that we had the strength to stand up to them!
