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The Council of States wants guidelines so that intersex children can be cared for uniformly and optimally. He accepted a corresponding motion from his legal commission. Two perspectives from affected parents and doctors.
“It was just after the birth. I was shocked because I had never heard of it. I didn’t know what variation in sexual characteristics meant.” This is what the mother of an intersex child says. Nobody knows about it, so she wants to remain anonymous. Her life has settled down – but it wasn’t always like this.
«I was afraid that my child would be bullied, that he might even be raped because he was different. I was afraid that it would be discriminated against and excluded.”
The parents discussed with doctors and psychologists at numerous interdisciplinary meetings whether they should have their child, whose gender is ambiguous, treated. The mother has mixed feelings about these meetings. The pressure to assign a gender to the child was enormous.
There is no right for us to tell the child what role he is being forced into.
“I felt very well looked after at the beginning.” But later the topic kept coming up that hormone surgery should be done. «My husband and I decided against it. There is no right for us to tell the child what role he is being forced into.”
Interventions only if there is risk
The endocrinologist Christa Flück has been treating children with a variation in sexual characteristics for years. When newborns have atypical genitals, she examines the child’s hormones and genes. Intervention only occurs when there is a risk.
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Endocrinologist Christa Flück.
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“In the neonatal screening, which is done with every baby, you can see that the child has a so-called adrenogenital syndrome,” says Flück as an example. This diagnosis can be made within 48 hours. The child needs hormone treatment or it will die.
“There’s hardly anything else you need if the external genitals don’t lean too much in the male direction and the baby can urinate and pass stool.” If this doesn’t work, surgical intervention may be necessary.
Council of States adopts directive motion
The mother of the intersex child is relieved that the issue has reached politics. But the directive motion adopted by the Council of States is inadequate. «Guidelines are recommendations. That’s not enough, you don’t have to adhere to guidelines.”
Christa Flück, on the other hand, supports the motion. As a representative of Switzerland at the European level, she worked with colleagues on issues relating to the treatment of intersex children. “There are of course still many questions that remain unresolved,” says Flück.
Social discussion needed
Paul Hoff is president of the medical profession’s central ethics committee. There is a good chance that the ethics committee will soon develop guidelines for dealing with intersex children. This is about providing assistance that must include social and ethical discussion.
“Decisions about whether or not to have an operation on a small child. “That affects the rest of a person’s life,” says Hoff.
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Paul Hoff, President of the Central Ethics Committee of the Medical Profession.
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Everyone is involved in the guidelines. Also parents with their intersex child. In doing so, they would have achieved a goal: a social debate about how to deal with children who deviate from the norm.