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Intersex surgeries raising concerns among Ugandans

Wednesday March 24 2021

Mulago Hospital Executive Director Dr Baterana Byarugaba, said they carry out surgeries as conditioned by the medical code of ethics

IN SUMMARY

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The birth of intersex children is real and a source of concern among a section of Ugandans.  While many health and human rights bodies worldwide are against the practice of operating them to become of one sex, the practice still thrives.

Although such surgeries are rarely successful, medical practitioners in the country keep on operating infants of such cases.
“Those intersex conditions which are manageable we do handle but those which are not, we don’t,” said Emmanuel Ainebyoona, the spokesperson for the Ministry of Health before he referred this reporter to Mulago National Referral Hospital medical officials with more information on the subject.
Mulago Hospital Executive Director Dr Baterana Byarugaba, said they carry out surgeries as conditioned by medical code of ethics.

 “We perform surgeries that are in line with our medical ethics. We do not perform
surgeries to please people. However, if any surgery is in our medical line of ethics, we do carry it out,” Dr Baterana said.
Intersex, which is also known as difference of sexual development (DSD), is an umbrella term that refers to people born with variations in sex characteristics that do not fit a boy or girl. Although some parents may have heard of this term, many who find themselves in a similar situation are shocked to realize that babies can be born with
anything other than a male or female sexual organ. Therefore, most parents abandon and deny such children their rights, referring to them as a bad omen.
Intersex children in Uganda have for long been rejected in society and their liberties such as freedom of association and right to health, among others have been denied. This is attributed to cultural beliefs, ignorance and stigma amongst people in various communities.

This reality has condemned intersex persons into isolation from the public, making it hard for them to access services such as education and health thus attracting growing condemnation from some doctors and activists.
Dr Ismail Mugoya, a medical specialist says the victims need all the necessary care and should not be rejected. 

“Let people associate with them to feel fit and avoid worries in them because they have a right to life, association, education and medical care,” he said.
Pervasive fear prevents many intersex persons from discussing their gender identities even with members of their families due to fear that they will be rejected.
Amos, a five year old boy is painfully facing such a situation. He is the son of Mr Andrew Kamulegeya and Rose Kamulegeya, residents of Kkoome Islands in Mukono District but currently, he is staying with his grandmother Rosemary Zawedde.
Zawedde says people in the community started isolating his grandson at the age of four when he started playing with his age mates and they came to realize that he was not like them.
"My neighbors have stopped their children from playing or associating with my grandson in any way. I have to keep him indoors most of the time to stay at peace with neighbours," Zawedde says.
She says this situation has forced her to ensure that even when she is bathing him, nobody sees the boy’s sexual organs because people make fun of him which affects him emotionally, mentally and psychologically, hence affecting his entire life.
Amos, whose stature appears to be that of a boy, enjoys doing house chores by way of assisting the grandmother.
He says he has experienced the harsh reality of rejection because of being born different. He adds that the tough times started at the age of three when he was abandoned by his mother due to fear of stigmatization from society.
Ms Zawedde says Amos' father was the first to abandon him claiming he was travelling to search for a job. However, since 2017, he has never returned to check on his son.
Ms. Zawedde adds that at the time Amos was born in Kawolo Hospital, Buikwe district, they were advised to go for surgery at Mulago Referral hospital, yet the then Shs 10 million procedure was too costly for them to afford.
Dr Musa Owor, a gynecologist, says “it is very important while screening such children to establish where the testicular tissues exist so that they can be removed. For females with ambiguous genitalia, they have a long clitoris and a closed vagina.”

He advises parents to stop worrying when they give birth to an intersex child, noting that the surgery can be done successfully. He adds that parents need to get a specialised doctor who understands intersex issues to find a progressive approach.
Dr Frank Mugisha, the executive director of Sexual Minorities Uganda, an organisation that works for sexual minorities, says “some intersex persons may identify with the sex marker assigned to them at birth while others may not.”

He said that he was aware that surgeries are conducted in the country.
He added that “most may feel forced into sex and gender categories that they do not identify with, which may be problematic in their adolescence when they are able to make decisions for themselves.”
He explained that  the human rights violators of intersex persons face include forced and coercive medical interventions, infanticide, discrimination in access to education, sports, employment and other services.

“The root cause of human rights violations against intersex people include harmful stereotypes, stigma, taboos and pathologization (which is treating intersex persons as necessarily ill or disorder)”,” he added.
According to the August 2015 survey by the Support Initiative for People with Congenital Disorder (SIPD), an intersex health and rights organisation, Uganda does not have a laboratory to perform chromosomal tests for children to determine sex and that genital reshaping surgeries are often flawed. It indicates that a few surgeries have
been attempted to alter ambiguous genitalia in infancy but most of these have been unsuccessful. It adds that in such cases, intersex children have ended up developing physical characteristics of the opposed sex at puberty.
The survey also indicates that most intersex children in Uganda are assigned female at birth and raised to identify as women, but for many intersex women, female biological milestones, such as menstruation and breast development do not necessarily follow. Instead, some are faced with changes associated with male puberty, such as beard growth, body hair and voice deepening.
A large number of intersex adults are dissatisfied with the results of childhood genital surgery; the study authors recommend that surgical decisions be postponed until adolescence or adulthood when the patient can give informed consent.
According to SIPD, at least three children are born with an intersex condition at Mulago Hospital every week. The condition also affects up to 1.7 percent of the world's population, according to the United Nations.
According to the 2019 study by Istanbul University in Turkey where Dr Banu Kucukemre Aydin and her colleagues analyzed data on nearly 14,200 newborns, 18 of them had ambiguous genitalia. That's a rate of 1.3 in 1,000 births - much higher than the rate of one in 4,500 to 5,500 reported in previous studies.
This publication has been written as part of the CHARM 2020 Media Fellowship and CHARM-Africa’s ongoing work to protect and expand the space for civil society organisations and human rights defenders, as well as nurture and enhance the effectiveness of independent media and journalism in the region.


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