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June 20, 2018

Intersex dilemma: When and if to choose surgery?

Roy* an intersex child who underwent a corrective surgery and assigned the wrong sex by doctors outside their home in Eastleigh, Nairobi./RHODA ODHIAMBO
Roy* an intersex child who underwent a corrective surgery and assigned the wrong sex by doctors outside their home in Eastleigh, Nairobi./RHODA ODHIAMBO

The mere fact that one identifies as male or female is something most people take for granted.

But for some people gender identity is a thorny issue, especially for those who find it hard to fit in what society classifies as ‘normal’. This is because society has adamantly refused to accept that they exist.

Such is the life of 14-year-old Roy*. He lives in the farthest corner on the second floor of a six-storey building in Eastleigh. When he wants to talk about anything that bothers him, his mom tells his three-year-old sister to watch the door so no one eavesdrops on the conversation.

This is exactly what happened during our interview. Once she takes her position, Roy’s mother Njeri* begins to narrate how doctors messed up her son.

It all started when she gave birth to him in 2004. She was not sure whether she had given birth to a boy or girl. To make matters worse she had no one to help her since she delivered at home.

“I did not know what that was. All I remember seeing were two sexual organs that confused me because I had never seen anything like that. I took my child to the Moi Teaching and Referral Hospital in Eldoret, where doctors did some tests and told me my child was a girl. They advised me to raise him as a boy for a year and after that I took him to hospital where they reconstructed his genitalia by cutting off his penis,” Njeri says.

Fourteen years later, Roy cannot fit in society because he is not a girl but a boy. 

 “I knew I was different from the other girls because I have a very deep voice and I behave more like a boy. This has however put me in an awkward position as some of my friends call me base girl and some are even curious to know why I am different,” Roy says.

The single mother of three moved to Nairobi after the 2007-08 post election violence and started a new life in the capital. She took her child for more tests at Kenyatta National Hospital. Further tests at Lancet Laboratories confirmed that her child was actually a boy.

“At that point I knew the doctors at MTRH had messed up my child’s life and now there’s nothing that can be done. As a family we have accepted who he is but had I known earlier, I wish I never took my child for the surgery,” Njeri says. 

Roy, who is now a KCPE candidate, wants to move to another place and school, where he can live as a boy without arousing society’s curiosity.

“I understand the surgery was done to make me a girl but I am a boy. They removed my penis but they did not remove my testes, I wonder why?” Roy says.

Hospital CEO Wilson Aruasa however said Roy who was born with ambiguous genitalia but that that tests done at the facility showed the patient was a girl.

He said that tests done to establish the number and structure of the chromosomes in the patient's body showed that the chromosome level was 46 XX, contrary to a report by KNH.

"Before such a surgery we carry out tests. Once we got the results and notified the parents, our team of doctors, created a vagina on the child." he says.

Aruasa said the hospital conducted all the required tests.

But with the different results, he added: "That is very interesting because even the ultrasound scan that was done showed that the patient was female." 

Roy is among four people who have been assigned the wrong sex by doctors. Data from the Intersex Persons Society of Kenya shows that 96 of its members have undergone corrective surgery more than four times. Five of them have been assigned the wrong sex. 

The society is concerned about the unintended surgeries on children who have not given an informed consent on the procedure. The society has 205 members; 138 are children aged 13, 57 are teenagers and 10 are adults.

SCARRED FOR LIFE

However paediatric surgeon Eric Hansen, who practices at Kijabe Mission Hospital, says surgeries on intersex persons are quite complex.

“If you have to consider who is to undergo the surgery and when the right time is, you have to consider if the surgery will have a high or low risk to the patient. Not just from a hospital perspective, but also what’s the risk of doing an operation on a child that will result in giving him another gender identity other than what they desire to look like,”

Hansen says. Intersex persons are born with any of a number of variations in sex characteristics, including chromosomes, gonads, sex hormones, or genitals that do not fit the typical definitions of male or female bodies.

There are about 41 congenital variations, collectively known as disorders of sexual development (DSD), or intersex traits. Families with such children live in secrecy for fear of being stigmatised by society.

Quite a number of intersex persons have been wheeled into the theatre to ‘be made perfect’, despite their not having a problem with how they look.

Most of those operated on and assigned the wrong sex are children who when they come of age realise that not only do they not fit in society but they are scarred for life because they cannot live the way they would want to.

“There is harm done sometimes by not doing things. This child is suffering because we are not doing anything. Putting a broad moratorium on infant genital surgery, which is what some people are calling it, is understandable at one level but then again how many children are we hurting by not helping them early when the risk is very low?” says Hansen.

Before any surgery, patients must give an informed consent indicating that they are aware of the procedure.

 In cases where they are not able to give consent, the guardian or parent does it for them. Which begs the question, why are corrective surgeries done on children who did not participate in the consent process?

 “A patient [child] needs to participate in the consent process.Some  have argued that the reconstructive surgery should be done when the child is eight years, others say 13, but the question is when does a child become able to understand the implications of the decision when they undergo an operation?” Hansen says. He further says for corrective surgery to be done, she/he must undergo a number of tests, including a biochemical test to determine the hormone and electrolyte level in the body, a chromosomal study, a physical examination, additional imaging tests such as ultrasound, CT scans, MRIs, etc. The findings are then presented to the family to make a decision.

“When we do operations we do it to make the patient more masculine or feminine by doing a genitoplasty. It’s not that I’m converting the patients, I am masculinising or feminising them by reconstructing what’s already there,” Hansen says 

But is it really necessary to make these patients perfect? Kyle Knight, a Human Rights Watch researcher, says surgeries should only be done to intersex adults and not children.

“Children simply cannot consent, so medically unnecessary procedures such as operations to reduce the size of the clitoris, remove gonads that are not malignant, or increase the size of the vagina, simply should not be done until the individual can consent to them,” he says.

“In any instance when surgery is needed to secure the health of the intersex child, it should be considered a valid healthcare option. For example, if the child cannot urinate, and surgery is needed, then that is a medically necessary surgery.”

Malta is the only country in the world that has banned surgery on intersex children, while South Africa is the only African country that requires a court order before a child undergoes surgery. 

Intersex Persons Society of Kenya director James Karanja says they are not opposed to reconstructive surgery but they want the government to put in place guidelines on how it should be conducted.

“If banned it would deny these children their right to healthcare. We however do not support cosmetic surgeries that are currently being done, since the surgeries are irreversible some children get assigned the wrong sex,” he said.

Research done by the HRW shows that there is no reason to change the size of an infant’s clitoris or create a vagina for a three-year-old other than to make that child conform to traditional ideas of what “men” and “women” should look like.

“That’s not medicine. That’s social norms and proposing a surgical solution to social “problems” of having a body that is a little different has no place in a medical profession that took an oath to “do no harm.” 

It is for this reason that people advocating the rights of intersex persons believe that any child who needs surgery that is medically necessary should have access to it. Cosmetic ones however should wait until a person is old enough to decide for themselves, they say.

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