The intersex puzzle

When babies are born, they cry loudly while we cheer in excitement. When James Karanja was born, he yelled lustily but everyone was silent. Pin-drop silent. And so, his most convoluted story began.

In the whole of Kenya, James Karanja, formerly Mary Waithera, is the only Kenyan whose passport declares that he is an intersex person. It has been a long, hard walk to this point.

Karanja’s mother was bewildered. Her baby sounded just fine but the traditional birth attendant seemed distraught. When grandma enquired whether she was giving three ululations or five – the cultural way of announcing the arrival of the newborn by gender – she was met with stunned silence.

Karanja was born with ambiguous genitalia, an unheard of phenomena in his village. He remained uncelebrated and unnamed. The family consulted the medicine-man who advised that they either cut off the penis or snuff out his life.

His maternal grandmother objected and sought help at a nearby Catholic church; the Italian priests referred them to Naivasha District Hospital. For three weeks, Karanja stayed in the wards under observation, but the doctors could not find anything requiring intervention.  They reassured his grandmother that he was otherwise normal. She was advised to take him home, keep a low profile and raise him as a girl and wait for adolescence to reveal what gender he would ascribe to.

Tension

Back home the nameless child and the doctor’s advice raised hackles. His father was adamant the child would not be named after his mother as per the norms. The tension led to his parents parting ways and he was raised by his grandmother mostly. He was eventually named Mary Waithera.

Raising Waithera was no mean feat. She was a feisty, spirited tomboy who did not conform to the assigned gender roles. She rarely interacted with other children and managed to avoid scrutiny. However, high school brought new challenges. She was enrolled into an all girls’ boarding school, showing up clean shaven with neither sanitary towels nor bras; she had no menses nor breast development. For four years, she played hide and seek with her peers during shower time.

Adolescence finally caught up with her, serving up fresh complications. The shoulders broadened instead of the hips and the voice deepened instead of the bust popping. She attracted girls instead of boys. She knew she needed answers so her grandmother took her back to the doctors.

XY chromosomes

The doctors were now clearer about the diagnosis; male pseudo-hermaphroditism. This is a condition where a person possesses the XY chromosomes, hence genetically male, but the genitalia fail to develop as expected. This may result from a genetic abnormality, damage to the embryo (teratogenic injury), or defects in the synthesis of testosterone or its action and that of its metabolite, dihydrotestosterone.

During foetal development, the testicular tissue is formed by week 10 of pregnancy. It produces testosterone, which is responsible for the development of the actual testis, the vas deferens, epididymis and the seminal vesicles. Testosterone is converted into dihydrotestosterone by a special enzyme called 5-alpha reductase. Dihydrotestosterone causes development of the penis, scrotum and prostate gland. At puberty, testosterone is directly responsible for the development of secondary sexual characteristics. For Waithera, the testosterone formed just fine, but the 5-alpha enzyme was either inadequate or did not work properly.

In such cases, the development of the external genitalia is not completed, resulting in genitalia that appears male-like but not fully developed, with a smaller penis, separate labia majora instead of a scrotum, and a small, blind vaginal opening. There is no womb or ovaries. At puberty, the testosterone kicks in and secondary male characteristics.

 It was such a relief to know exactly what was different about her. Mary Waithera went on to complete high school but it was time to bid her farewell and embrace the new person; James Karanja. The doctors suggested genital surgery but James has never felt the need for it.

Finding James was not as smooth as he thought. He ditched the skirts for pants and felt alive. The village was confused. The transition was rough; he suffered assault and humiliation by being stripped in public. His national identity card reads James but his school certificates read Mary. It was almost impossible to enroll into the university. Thrice, he attempted to end his life.

Intersex persons

It is astounding the things we take for granted in Kenya that remain a daily struggle for intersex persons. The inability to be identified as an intersex person in the registration of birth, for example, led to the filing of a suit in court for ‘Baby A’  in 2014 since she was unable to get a birth certificate.

Adolescence coincides with high school, making it tricky to join a boarding school. Where do intersex persons get accommodated while in police custody? This was demonstrated in the case of RM vs the Attorney General and others. Even worse is the unspoken perennial societal curiosity into one’s sexual life.

For ages, doctors the world over recommended that intersex children be raised as female and undergo surgery to identify them as female. Despite limited statistics, it is clear that adolescence is the only true litmus test of what the child prefers to grow into. It means that surgeries performed earlier may result in dramatic gender identity crises later.

How can the medical fraternity help James? There is urgent need to amend Cap 107: The Registration of Persons Act, to include intersex persons. This will allow us to assign this gender without barriers. Counsel parents to give their children gender-neutral names which they can keep even when they lean towards one gender. Avoid unnecessary surgery, especially before the person establishes a gender identity, and educate the public about the condition to minimise stigma.

Today James is grateful to be alive. Through his foundation, Intersex Kenya, he enjoys a few extremely significant gains – his passport status, and the fact that the 2019 Census actually documented the intersex gender.

Dr Bosire is an obstetrician/gynaecologist