But now, as those children reach adulthood, the backlash has begun. They are angry at the culture of secrecy and shame, and that something as personal as gender and genitalia was decided without their permission. They talk of having their genitals “butchered” and, where there is nerve damage, being deprived of sexual fulfilment.

At a conference on intersex held in London last week, one of the most moving presentations was given by Melissa Cull, a 35-year-old woman with congenital adrenal hyperplasia, a condition that left her with enlarged female genitals. During childhood, she underwent a number of operations that left her physically and emotionally scarred and unable to have a satisfactory physical relationship (she had to take painkillers before sex). She spoke of doctors warning her not to touch herself, and of a “total loss of ownership of her body”. She finished by asking the clinicians to imagine having their own genitalia interfered with: “Would you really put the way you look before your sexual pleasure, wellbeing and your gender just to please society?” The “sex” question has recently been addressed by Sarah Creighton, consultant gynaecologist at University College Hospitals in London, who runs a clinic for intersex adults. Creighton and her colleague, Dr Catherine Minto, found that a quarter of the women who underwent clitoral surgery were unable to achieve orgasm. While every case is different, Creighton and Minto advocate waiting until the child is older before surgery, partly because revision surgery is often needed at puberty.

That view is opposed by other surgeons. Philip Ransley, consultant paediatric urologist at Great Ormond Street, says that operating later can bring psychological problems of its own, because untreated children can be left questioning their gender. “What happens if a girl has a big penis in the gym?,” Ransley asks. “These are the problems they tell us about. The idea that we just sit back and wait for the child to decide seems to me a very poor philosophy.”

Creighton, who organised the London conference, says she has noticed a shift in parental attitudes towards later surgery, and parents today are far more ready to accept slight abnormalities. Creighton says: “It is a really hard choice for parents to make. Parents worry about things such as the nanny or childcarer seeing their child naked, and then everybody knowing. And it is little things, such as going to ballet or going swimming, that become difficult. I have to say, many parents are still opting for surgery, although I think there is a trend towards less surgery for the less virilised girls. My view is that surgery on babies could be delayed until their teens, so the child can participate.” Interestingly, Creighton believes the growing reluctance to opt for early surgery stems from parents wanting their child to be involved. The current onus on medical disclosure also makes it virtually impossible — as well as unethical — to conceal such secrets if surgery is done.

Honesty, says Jasmine, a woman born completely female except for the fact that her reproductive organs were male, is the most important contribution a parent can make. Jasmine discovered her condition as a teenager when she failed to start her periods. She also supports later surgery where possible, and believes genital reconstruction for purely cosmetic reasons is rarely justifiable because of the psychosexual damage that can be done. She says: “I have never come across a single person who regretted being told the truth about their past.

“It is important that children don’t think it is a secret kept from them by their parents. The best advice for parents is not to rush into a decision about surgery, and not to allow an operation before they have taken their child home.”

Adrenal Hyperplasia Network: www.ahn.org.uk
Androgen insensitivity syndrome support group: www.medhelp.org/www/ais/