By Lerato Kodisang, Health-e News
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.
One of them is 33-year old Lerato Sikhosana 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, says medically unnecessary and irreversible interventions that were done on intersex children who are now adults, are more common than many people realise.
Maquba says 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.
Maquba says the long-term effects can include chronic pain, scarring, infertility, reduced sexual sensation and lifelong hormone treatment. According to Maquba, 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,” says Maquba.
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 says 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, seen by Health-e News, 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 available medical records do not establish when the procedures were performed, why they were considered necessary or what consent was obtained from Sikhosana’s mother.
Sikhosana says her mother did not know the nature or extent of the procedures that had been performed over the years.
Sikhosana says her mother named her Morena at birth and raised her as a boy until the age of 8, when she was renamed Lerato.
“My mom raised me as a boy from birth till the age of 7. At the age of 8 I was referred to a psychologist where I was asked mostly about becoming a girl and how I feel about it.”
Sikhosana says she attended regular hospital check-ups because she was born intersex. She says doctors and nurses also insisted that she attend psychological sessions as part of her care. She says the encounters with therapists left her confused.
Medical records from the endocrine clinic at Chris Hani Baragwanath Hospital document delayed puberty and later treatment with Premarin, an oestrogen medication.
Sikhosana says she was prescribed different medication at 12 and subsequently developed female physical characteristics. She says 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 says.
“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 says she stopped treatment at 18 and declined another planned genital operation. She says she had started questioning her treatment and the physical changes to her body.
“That freaked me out,” she says.
“I feel like a failed or incomplete project. This body is uncomfortable,” says Sikhosana.
Sikhosana says she 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 says she cannot afford private healthcare. She says she does not want to return to public hospital for medical assessments or treatment because she mistrusts them.
She says she wants medical and psychological support from healthcare professionals she can trust.
“I need justice. I would like to have psychological assistance, gynaecologists that will be able to examine me and to receive medical help,” she says.
“Above all I want to get medical lawyers who will help me fight these medical injustices that were done to me.”
In December 2024, the South African Human Rights Commission (SAHRC) launched a guide for parents and guardians of intersex children.
The guide warns that decisions made early in a child’s life without adequate information can have long-term consequences for their physical and psychological wellbeing.
It advises against treatment resulting in sterilisation unless medically necessary. It also recommends postponing medically unnecessary surgery until an intersex child is sufficiently mature to participate in informed decision-making and consent.
Intersexions‘ Maquba says 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 says interventions that are not medically necessary should be delayed until children can participate in decisions about their own bodies.
The Gauteng Department of Health says approaches to treating children born with variations in sex characteristics have changed substantially over the past three decades.
In answers to questions sent by Health-e News about Sikhosana’s medical case, the department’s spokesperson, Steve Mabona says 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,” Mabona says.
Mabona says historical approaches internationally more commonly involved early surgical assignment and other interventions.
He cautions that today’s standards cannot simply be applied retrospectively without establishing what professional standards applied at the time.
The department says it is not currently able to verify the circumstances of Sikhosana’s treatment or determine whether particular interventions were appropriate without formally reviewing her available records and other information.
“It is important to recognise that record-keeping practices, archival systems, retention requirements and technology have changed significantly since 1993,” Mabona says.
But Mabona says Chris Hani Baragwanath Academic Hospital would support a formal review of her case.
He says this would include examining the available clinical records, reasons for the interventions, consent documentation, discussions with Sikhosana’s parents or guardians and the professional guidance applicable at the time.
“Following an appropriate review, the findings would determine whether any further clinical, administrative, medico-legal or other process is warranted.”
The department says 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.
