South Africa: Intersex Adult Seeks Justice for Childhood Surgery

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. Follow us on WhatsApp | LinkedIn for the latest headlines 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. What Lerato Sikhosana'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 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. Growing up questioning her body 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