Spotlight on genital surgeries performed on intersex infants

Ntsoaki Motaung

Performing genital reshaping surgery on intersex children at birth or soon after is harmful, intersex advocates say.

Intersex advocates champion the rights of intersex persons and raise awareness and recognition of intersex issues and rights.

They also lobby and advocate for inclusion as well as an end to genital mutilation.

A person has an intersex condition, or difference of sexual development (DSD) if they are born with a body that is different from what most people expect for a male or female child.

Such anomalies can include atypical genitals, chromosomes, or internal sex organs.

Speaking at the sensitization of the community gatekeepers on HIV prevention meeting in Botha Bothe last week, ‘Mamoliehi Lenyeta from AME church said back in the days when women delivered at home, children born with a combination of male and female biological traits were sometimes killed.

This, Lenyeta said, would be swept under the carpet by elders who would claim that the child was stillborn.

This shocking claim was reiterated by Tampose Mothopeng, the Executive Director of the People’s Matrix Association, in an interview with Newsday.

“Years back when most of the women were delivering at home, many intersex infants were killed and said to be stillborn. The elder people wanted to avoid the stigma and discrimination surrounding intersex people,” Mothopeng said.

But now the government emphasises facility-based deliveries which are much safer than childbirths at home.

This is because studies have confirmed that supervised deliveries by health professionals reduce the health risks to the mother and child.

Proper medical attention aimed at delivery under hygienic conditions also reduces the risk of complications and infections post-delivery.

However, intersex children are still not safe.

The stigma surrounding intersex people, and the shame they feel are still present in Lesotho.

As a result, parents of an intersex child may experience a lot of pressure to make life-changing decisions about their child.

Gender advocates said it was common for doctors to perform involuntary, non-lifesaving surgeries on intersex infants to make their genitals look more “normal”.

They said this was done because some parents are distressed by the appearance of atypical genitals, and they believe “normalcy” will make the child’s life easier.

But genital reshaping surgeries often do not work out as planned.

Mothopeng said Lesotho does not have doctors who are intersex specialists and their surgeries “often go wrong”.

“When we say sex reassignment has gone wrong, it is when an intersex person is born with two sexual genitals and a surgery is made to leave them with one and they are left with the one they are not pleased with,” Mothopeng said.

He explained that a reassignment gone wrong can affect a person emotionally for a lifetime.

“In Lesotho, we have many people who were wrongly reassigned because we do not have intersex specialists. Sometimes doctors do surgeries on intersex infants to make their bodies fit binary ideas of ‘male’ or ‘female’,” he said.

He added: “Mostly the decision for making sex reassignment and deciding on which reproductive or sexual parts an intersex child or baby can be left with is made by parents and doctors without the consent of the affected person. That is a violation of human rights.”

‘Mapoloko Mosena, representative of the Christian Council of Lesotho (CCL) in Botha-Bothe, also said that some parents make decisions on behalf of their children that can have permanent ramifications and impact their physical and mental wellbeing in the future.

“Bad decisions by parents have left many children with sexual reproductive systems that they do not like or that do not match with their feelings,” Mosena said.

“Some are left with vagina while they feel they are males and vice versa. That messes with the emotional wellbeing of the child as they grow up as well as leaving them confused about who they really are,” she added.

The District Management Health Team Nurse in Botha Bothe, Fusi Perekisi, emphasized that it was important for parents to wait until their children can make decisions for themselves.

Perekisi explained that when an intersex child is born, a medical assessment of the reproductive system and the urinary system is needed.

“This is to asses which genital organ is dominant on which system, however, the medical assessment alone cannot give a clear direction as to which sex can be chosen for a person,” he said.

“It is necessary that parents wait for the child until they can express their feelings. That is when a decision to do surgery can be taken. That is when the affected persons can decide for themselves,” he added.

Genital reshaping surgeries, according to some studies, are not reversible and can cause lifelong physical and psychological pain, scarring, lost sexual sensation, and many other problems.

Sometimes the procedures also involve involuntary sterilization.

Intersex adults who spoke to Newsday on condition of anonymity last week also argued that only the affected person can decide whether to take on the risks associated with the surgery.

They said genital reshaping surgery should not be done until the child is old enough to participate in the decision-making process.

They also pleaded with the government as well as health professionals to stop treating them like “freaks of nature”.

“We do not ask for pity but for our government and health professionals to stop treating intersex people like freaks of nature. One would go to a hospital for minor things but the moment a doctor or nurse finds out that they are intersex, they would call the entire hospital to come and see as if there is anything wrong with the person,” they said.

They also indicated that most of the people that had their sexual organs altered when they were young were left with scars “that make sex a gruesome experience to them”.

“We think the only job for parents is to give their children names and some identity until such a child is grown to make their own decisions. Intersex people are everywhere, we go to school with them and eat in the same restaurants. What we want non-intersex people to know is that they should be nice to everyone regardless of what is between their legs or flowing in their veins,” they added.

According to June 2017 Submission by GATE to the World Health Organization: Intersex codes in the International Classification of Diseases (ICD) 11 Beta Draft, a major concern for intersex people is that so-called sex normalizing procedures are often undertaken during their infancy and childhood, to alter their bodies, particularly the sexual organs, to make them conform to gendered physical norms, including through repeated surgeries, hormonal interventions and other measures.

As a result, such children may be subjected to medically unnecessary, often irreversible, interventions that may have lifelong consequences for their physical and mental health, including irreversible termination of all or some of their reproductive and sexual capacity.

“In countries around the world, intersex infants, children and adolescents are subjected to medically unnecessary surgeries, hormonal treatments and other procedures in an attempt to forcibly change their appearance to be in line with societal expectations about female and male bodies. When, as is frequently the case, these procedures are performed without the full, free and informed consent of the person concerned, they amount to violations of fundamental human rights,” reads the submission.

The submission further shows that parents of children with intersex traits often face pressure to agree to such surgeries or treatments for their children.

They are rarely informed about alternatives or about the potential negative consequences of the procedures, which are routinely performed despite a lack of medical indication, necessity or urgency.

The rationale for these is frequently based on social prejudice, the stigma associated with intersex bodies and administrative requirements to assign sex at the moment of birth registration.

According to United Nations Free and Equal (UNFE) initiative, it is estimated that up to 1.7 percent of the population has an intersex trait and that approximately 0.5 percent of people have clinically identifiable sexual or reproductive variations. “Intersex is an umbrella term used to describe people born with sex traits that do not fit binary medical definitions of male or female sexual or reproductive anatomy. Intersex populations are born with these differences in sex traits or may develop them during childhood. Human sex development is naturally diverse, with many variations possible in genitalia, hormones, internal anatomy, and or chromosomes.”