More than 10 intersex adults have approached a South African support organisation since 2020 saying they underwent surgery or other irreversible medical interventions as children without their or their parents’ informed consent, writes Lerato Kodisang for Health-e News.
One of them is Lerato Sikhosana (33) from Orange Farm, south of Johannesburg. She says medical procedures performed when she was a child have left her struggling with physical and psychological consequences decades later.
Intersex is an umbrella term for people born with sex characteristics that do not fit typical definitions of male or female bodies. These variations can involve reproductive organs, hormones, chromosomes or genitalia, and may be apparent at birth or become visible only later in life.
Peaceworth Maquba, intersex activist and founder of the support group Intersexions, said medically unnecessary and irreversible interventions that were done on intersex children who are now adults, are more common than many people realise.
Maquba said since 2020, more than 10 intersex adults have approached the organisation reporting that they had undergone surgery or other irreversible medical interventions during infancy or childhood without their or their parents’ informed consent.
Long-term effects can include chronic pain, scarring, infertility, reduced sexual sensation and lifelong hormone treatment, and Maquba said psychological trauma, anxiety and loss of trust in healthcare can also follow.
“Where a child is healthy and there is no immediate threat to their health, surgery primarily intended to alter the appearance of their genitals should not have been presented as a medical necessity.”
What Lerato’s medical records show
Sikhosana was born at Chris Hani Baragwanath Hospital in 1993 with ambiguous genitalia, or atypical genitalia – a rare condition where a newborn’s external sex organs do not look clearly male or female.
Sikhosana’s mother says at birth, doctors initially told her that her baby was a boy. But she says there was a medical condition that needed to be corrected. Sikhosana says her mother understood that doctors were going to remove two protrusions she could see on the baby’s abdomen.
“My mom was never given all the details, that I was born with ambiguous genitalia,” Sikhosana tells Health-e News.
Her mother said the first operation took place while Sikhosana was still an infant. The family does not have the original records from her birth and early childhood. The medical records they have been able to obtain begin in 2000, when Sikhosana was seven.
Those records document that she had undergone several procedures as a child, including a clitoral reduction and bilateral gonadectomy, a procedure to removes the gonads – the reproductive organs that produce sex cells and hormones.
The records do not establish when the procedures were performed, why they were considered necessary or what consent was obtained from Sikhosana’s mother.
Sikhosana said her mother did not know the nature or extent of the procedures performed over the years.
Growing up questioning her body
Sikhosana said her mother named her Morena at birth and raised her as a boy until the age of eight, when she was renamed Lerato.
“At the age of eight I was referred to a psychologist where I was asked mostly about becoming a girl and how I feel about it.”
Sikhosana said she attended regular hospital check-ups because she was born intersex. Doctors and nurses also insisted she attend psychological sessions as part of her care. She said the encounters with therapists left her confused.
“I was being prepared to become a girl.”
Medical records from the endocrine clinic at Chris Hani Baragwanath Hospital document delayed puberty and later treatment with Premarin, an oestrogen medication.
Sikhosana said she was prescribed different medication at 12 and subsequently developed female physical characteristics. It was only years later that she learned from hospital staff that she had been receiving hormone treatment.
A 2007 medical record states that Premarin was being used for the “induction of breast growth”.
“I continued with psychological sessions and I remember telling the psychologist that I do not like breasts,” Sikhosana said. “I said I play soccer, breasts will disturb me. That was an excuse I told the psychologist indirectly because I did not want to be a girl, I felt I was a boy.”
Sikhosana said she stopped treatment at 18 and declined another planned genital operation. She had started questioning her treatment and the physical changes to her body.
“That freaked me out,” she said.
“I was assigned a gender that neither me nor my parents consented to. I feel like a failed or incomplete project. This body is uncomfortable.”
Living with the consequences
Sikhosana still has unanswered questions about her body and the treatment she received as a child.
“This body frustrates me,” she says. “Psychologically this issue messed me up. I am oversensitive. I do not have long romantic relationships.”
Sikhosana is unemployed and cannot afford private healthcare. She does not want to return to public hospital for medical assessments or treatment because she mistrusts them. She wants medical and psychological support from healthcare professionals she can trust.
New guidelines call for delaying unnecessary interventions
In December 2024, the South African Human Rights Commission (SAHRC) launched a guide for parents and guardians of intersex children, warning that decisions made early in a child’s life without adequate information can have long-term consequences for their physical and psychological well-being.
It advises against treatment resulting in sterilisation unless medically necessary, and recommends postponing medically unnecessary surgery until an intersex child is sufficiently mature to participate in informed decision-making and consent.
Intersexions‘ Maquba said parents can feel pressured into consenting to surgery because they believe it is urgent or medically necessary. The organisation advocates for accurate information, psychological support and intersex-led guidance.
Maquba said interventions that are not medically necessary should be delayed until children can participate in decisions about their own bodies.
Health Department responds
The Gauteng Department of Health said approaches to treating children born with variations in sex characteristics have changed substantially over the past three decades.
Department’s spokesperson Steve Mabona said current healthcare places greater emphasis on human rights, informed consent, bodily autonomy, multidisciplinary care and the best interests of the child.
“Where an intervention is not medically urgent, particular care must be taken before undertaking irreversible procedures that may affect future sexual function, fertility, bodily autonomy or identity,” he said.
“The evolving human-rights approach supports allowing the child to participate increasingly in decisions concerning their body in accordance with their age, maturity and capacity.”
“It is important to recognise that record-keeping practices, archival systems, retention requirements and technology have changed significantly since 1993,” Mabona said.
But he added that Chris Hani Baragwanath would support a formal review of her case: this would include examining the available clinical records, reasons for the interventions, consent documentation, discussions with her parents or guardians and the professional guidance applicable at the time.
“After an appropriate review, the findings would determine whether any further clinical, administrative, medico-legal or other process is warranted.”
The department said the legal and ethical frameworks around healthcare now provide important guidelines for informed healthcare decision-making, confidentiality, dignity and respect for patients. This includes the National Health Act, the Children’s Act, professional ethical requirements and the Patients’ Rights Charter.
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