Kenya moves to resolve intersex conundrum

In 2009, a special baby was born. A baby who five years later, would help set a precedent in Kenyan law.

Baby A, as the baby was referred to in court documents, was different. Baby A fell into the category of babies who can neither be classified as male or female. Babies who make up between 0.05 to 1.7 per cent of the global population, according to United Nations estimates. These babies are referred to as intersex, because they are born without biological sex features that would give them a distinct identity as male or female. If you ask the question: “Is it a boy or girl?” there will be hesitation as it is not clear.

Sex (whether you are male or female) is a function of biology. It is visible in your genitals and your reproductive glands (ovaries for women and testes for men), and evident in your hormones (women have higher levels of oestrogen and progesterone and lower levels of testosterone, while men have higher levels of testosterone and lower levels of oestrogen).

Sex is also evident in the chromosomes (with women having XX and men having XY).

Most humans fall within this binary, but some don’t. Some people are born with a combination of female and male features (whether physical, hormonal or genetic); some have features that cannot be categorised as wholly male or wholly female. Many forms of intersex (for instance ambiguous genitals) are detected at birth, but others may only become evident during puberty, when sex hormones drive the development of male or female characteristics.

PRECEDENT

When a baby is born, the birth attendant (whether in hospital or at home) mentions its sex (boy or girl). Baby A was born at home, with both male and female genitals. The issue of whether Baby A was male or female, came up officially when Baby A’s mother took the baby to hospital for a check-up and failing to decide whether the baby was male or female, health workers put a question mark beside the option boxes for the sex markers (male or female) on hospital records.

Without a definite sex, the baby could not get a birth certificate, and without a birth certificate, the baby would later have difficulties getting other national identification documents, and be locked out of places where they are needed (such as to pursue education, use mobile money, register as a voter and vote or to access banking and other services).

Moreover, the baby was going to undergo “corrective” surgery that would assign Baby A a sex and in turn gender. (Unlike sex which is biological, gender is a social construct based on beliefs and stereotypes about how men and women should behave). Many children who are born intersex undergo “corrective” surgery, to make them either boys or girls. Such surgeries are usually unnecessary, as they have no therapeutic value, being done only to make the child fit into what is considered “normal.”

The first time the matter of the legal recognition of intersex people was addressed, the ruling (in 2010) was not favourable to RM, an intersex prisoner who had been jailed in a prison for men, who sued the Attorney General seeking judgment on a raft of matters affecting intersex people. The court ruled that intersex people could be categorised as either male or female based on their dominant characteristics.

Four years later (in 2014), Baby A helped set legal precedent in the quest to address the matter of intersex persons in Kenya. In a landmark ruling, the High Court ordered the government to issue Baby A with a birth certificate, and directed the Attorney General to name a body that would conduct a census of intersex Kenyans and develop guidelines and policies for their recognition and support. Next Monday, the taskforce that was formed in 2017 to make the latter two of these directives possible, will release a report with its findings.

RIGHTS

The Taskforce on Policy, Legal, Institutional and Administrative Reforms regarding the Intersex Persons in Kenya chaired by Mbage Njuguna Ng’ang’a of the Kenya Law Reform Commission, presented their report, in which they made several recommendations to safeguard the interests of intersex persons, to the Attorney General in March.

It has made recommendations touching on the health, recognition, documentation, criminal justice affairs and education and awareness as far as intersex people in Kenya are concerned.

The taskforce interviewed 634 respondents, including 40 intersex and 72 people (such as parents, other relatives, partners and allies), who have regular and sustained contact with intersex Kenyans. Taking the higher United Nations estimate of 1.7 per cent, the taskforce estimates that there are 779,414 intersex individuals in Kenya, 77 per cent of whom are aged between 18 and 35 years. Most (71 per cent) of the parents interviewed said that they were aware that their child was intersex at birth.

However, only five per cent of intersex individuals recognised themselves as intersex, while the others were confused about their status, something that was blamed on lack of awareness and lack of information and support. While many intersex individuals had birth certificates, the recorded sex conflicted with their self-recognised sex, and their changes in physical appearance after puberty.

This is perhaps why many intersex individuals said that parents and caregivers should wait for a child to reach puberty before having surgery to assign them a sex done, to allow the child to manifest dominant sex characteristics, and to allow the child reach an age where they could consent to medical interventions.

“Intersex cannot be corrected. A child’s interests should be put first. It is important to understand that unless people stop having children, there will always be children who are born intersex and those children, just like other children have rights.

“And you can’t cure a mother’s distress at having a child who is intersex by cutting the child’s genitals,” James Karanja, an intersex person who runs the Intersex Persons Society of Kenya, and a member of the taskforce, told HealthyNation in an interview last week.

He added that when children are subjected to “corrective” surgeries and other medical interventions, especially before puberty when sex characteristics become clearer driven by hormones, it leads to difficulties later on especially if the assigned sex is different from the self-recognised sex.

ACCESS TO HEALTH

Moreover, intersex individuals interviewed said that there was need for a person to have all the necessary medical diagnostic tests done before any surgery.

Apart from being forced to undergo “corrective” surgeries, intersex people listed other healthcare challenges that they face, with 54 per cent of respondents saying their experience of accessing healthcare was poor due to high cost of treatment and few hospitals where they could access specialised care, with many diagnostic tests having to be sent to either South Africa or India.

Other challenges included lack of proper psychosocial care, and traumatic patient experiences, such being used by doctors as specimens and mismanaged and frequent surgeries due to misdiagnosis or wrong treatment, leading to unhealed scars and urinary incontinence which meant having to wear diapers in adulthood.

They also mentioned that they had difficulty accessing NHIF cover, especially for hormonal treatment.

To ensure that intersex individuals attain the highest standard of health, the taskforce recommends that the Ministry of Health, in consultation with relevant agencies, formulate special programmes for intersex care, treatment and protection in health facilities, including counselling on sex development during antenatal clinics, genetic testing for pregnant mothers, and screening for newborns.

“This will introduce ante-natal genetic testing for every expectant mother and foetus, including for Congenital Adrenal Hyperplasia (CAH), thus reducing under-5 mortality rates attributed to CAH,” reads the report.

The taskforce also recommends specialised care in well-equipped public referral (Level 5 and 6) hospitals, which will be designated centres of excellence with a multidisciplinary team to attend to the needs of intersex individuals holistically. The report adds that the Ministry of Health should put in place a clear referral mechanism for intersex people in all health facilities to refer them to the designated centres of excellence.

MEDICAL INTERVENTIONS

Further, the report recommends that surgical and hormonal interventions for children in relation to their intersex status, should only be carried out in case of medical emergencies, and based on informed consent. As such, the Director of Medical Services in consultation with the Kenya Medical Practitioners and Dentists Board, is to develop a protocol on surgical and hormonal interventions that constitute medical emergencies.

The intersex child and guardians/ parents of the child or intersex person must be fully and properly informed on the potential risks and benefits and the consequences and alternatives of all major sex-related medical interventions. In addition, their express consent for medical interventions must be obtained.

Moreover, except for a documented medical emergency, such decisions should be deferred until the intersex person is able to give informed consent facilitated by the multi-disciplinary team, taking into account the child’s age, mental and physical development.

“The Ministry of Health is to work with other regulatory agencies towards the protection against involuntary and inappropriate medical intervention and ensure effective remedy for persons otherwise affected,” notes the report, calling for comprehensive care, treatment and protection guidelines that are in the best interest of the child.

“The guidelines shall be pre-cautionary in nature and will provide an outline of the procedures and steps to be followed by healthcare professionals.”

The taskforce report also recommends that the government establishes a fund to cater for all medical-related interventions for intersex people and to give them free or subsidised medical insurance under the National Health Insurance Fund or any other schemes for intersex people. Some of the proposed diagnostic tests to be covered include: Karyotype tests (for chromosomes), hormonal tests and treatments and scans.

The report by the taskforce on intersex persons in Kenya will be launched on April 15.

Additional reporting by Felista Wangari