Thousands of South Africans have ‘mixed’ genitalia
Intersexed children not uncommon
A child born with genitals that are not strictly male or female is not as uncommon as we think – but a web of silence has been woven around intersexed babies. Just as many children are born with various birth abnormalities, genital variations abound and should not be hidden as shameful or unspeakable.
More than 24,000 of the current South African population of around 48,7 million was probably born intersexed – that is, of mixed or ambiguous sex anatomy. An estimated one in 2000 children are born intersexed, according to the Intersex Society of North America (ISNA), and their gender is usually surgically assigned to them – mostly as female.
South Africa may have more intersexed people than most countries
However, it is believed that South Africa may have more intersexed people than most other countries, Intersex South Africa (ISSA) said on its website. The ISSA claimed that as many as one in 500 South Africans may be born intersexed – almost 100,000 – and as many as one in 50 – or almost 1 million people – have sex organs that doctors consider ‘atypical’.
Far more children are born with ambiguous genitals than intersexed
A far higher number of people than the intersexed are born with genitals that are not ambiguous but which doctors consider ‘unacceptable’, such as girls with clitorises considered ‘too large’ (longer than 1 cm) or boys with hypospadias (the urethral opening is not in the tip of the penis) or penises considered ‘too short’ (less than one inch or 2.54 cm).
What is intersex?
Intersex conditions vary widely and include people born with reproductive systems, genitals, hormonal patterns or sex chromosomes that are not strictly male or female.
Babies with genitals considered ‘unacceptable’ are usually operated on, but this may cause irreversible damage. For instance, surgery to shorten a girl’s longer-than-normal clitoris may result in damage to her genital nerve endings. Surgical procedures and hormonal treatment may be carried out on boys born with a penis that is ‘too short’, reassigning their gender as female. The genitals of an estimated 2000 American babies are operated on each year, in many cases damaging their fertility and sexual responsiveness.
Veil of secrecy surrounds intersex births
These surgeries and procedures, in many cases carried out in virtual secrecy, are often performed without the parents being fully informed of the full extent of their child’s condition, the long-term consequences of the surgery for their child, or the success rate of such operations. It is this treatment of parents and the intersexed child at the hands of the medical establishment that gave rise to the Intersex Society of North America (ISNA).
Time to end unwanted genital reassignment surgery
The ISNA aims to reform the treatment of intersexed children, including ending unwanted genital surgery carried out on infants with atypical sex anatomies. It also seeks to encourage doctors not to perform any non-essential genital surgery on intersexed infants until they are old enough to give their informed consent to this.
Causes and types of intersex conditions
There are many causes of intersex conditions, such as exposure in the womb to hormones, or genetic abnormalities. An intersexed person may appear male or female outwardly and may not realise until a teenager or adult that he or she is intersexed. For instance, men born with Klinefelter’s syndrome have an extra X chromosome with the standard male XY chromosomes – and may not be aware of this until their infertility is discovered. Androgen insensitivity syndrome, or AIS, involves people who are genetically male in that they have the XY chromosomes and testes, but their bodies develop as females due to their androgen receptors not responding to male hormones. Their condition may not be discovered until they reach puberty and fail to menstruate. A woman born with MRKH syndrome is genetically female in that she has XX chromosomes but no vagina, womb or fallopian tubes. This is usually discovered when she becomes sexually active.
According to ISNA board of directors chair Alice D. Dreger, it is physiologically impossible for a person to be born with all the male and female parts. However, at birth an intersexed person will have some physical parts typically associated with males and some typically associated with females. Or they may have some parts that are considered gender ambiguous, such as a scrotum that is divided and so appears more like labia (the lips of a woman’s vulva, or external genitals), or a phallus that is halfway between a penis and a clitoris.
An intersex birth can be traumatic for parents
The birth of an intersexed child may be traumatic for the parents, who wish their children to be happy and lead ‘normal’ lives, Dreger reported on fathermag.com. Doctors and parents may conduct tests for some days before deciding what gender to assign to the child. It is important to note that intersexed children differ from transgendered people, who are mostly born with ‘standard’ male or female anatomy but feel they are a different gender to the one assigned to them at birth.
Ambiguous genitals are similar to other birth 'abnormalities'
The ambiguous genitalia of an intersexed child is not diseased, just different, Dreger said. They may result from an underlying metabolic condition such as Congenital Adrenal Hyperplasia (CAH). Metabolic conditions can usually be treated without surgery. Indeed, many intersex babies are healthy and require no medical intervention apart from tests to diagnose their condition.
What parents of an intersexed baby should do
Dreger advised parents who give birth to an intersexed child to fully inform themselves before making any decisions, as follows:
Intersexed children want to choose their gender
- The parents must question doctors closely to find out exactly what the condition of their child is.
- They need to know from the doctors which anatomical parts may threaten their child’s well-being, and which aspects are psychosocial concerns.
- The parents need to find out what interventions are needed urgently, such as surgery if their child is born with no urinary opening, and what can be deferred until the parents have become more informed on intersex conditions and decide what action to take, if any.
- The parents should seek counselling from professionals as well as support from other parents of intersexed children.
- Parents should not to allow doctors to pressurise them into consenting to ‘normalising’ genital surgeries when the child is very young, which is what doctors usually do. Such surgeries are highly risky and may affect their genital sensation (which will affect the child’s sex life later), continence and fertility, and may be potentially life-threatening.
- ‘Normalising’ surgeries are not medically necessary for the child’s physical well-being and in fact, often surgery is unable to give the child genitals that look ‘normal’. Moreover, the success rate of ‘normalising’ genital surgeries in infancy or early childhood is poor in the long term.
- These days, more and more doctors are recommending that any non-emergency surgery be delayed until puberty as surgery tends to be more successful at this age, and the child can be a part of the decision-making.
- Recent research has shown that the ‘nurture’ theory about a person’s gender is questionable and doctors recommending ‘normalising’ surgery cannot know what gender the child will end up feeling.
- Doctors and parents can work together to try to determine what gender a child is likely to feel based on the child's anatomy and physiology, and on what doctors know from scientific studies of outcomes in similar cases, and on how the parents view their child's gender.
- There is a possibility, however, that the assigned gender may not ‘hold’ and that the child may choose to express the other gender at a later stage – thus it is better to leave the child’s body as intact as possible. If parts of the body are removed, it may make it harder for the child to express their chosen gender later.
A study by sociologist Suzanne Kessler and her interviews with intersexed adults showed that most intersexed people wanted their parents to let them make the decision whether or not to risk ‘normalising’ surgeries. If the decision is put off until puberty, the child is able to make his or her input and the prognosis for their outcome is better. Surgical techniques are also likely to improve during this waiting period.
Intersex is no cause for shame or secrecy
The birth of an intersexed child is not all that uncommon and it is a natural variation that is found in all animals and throughout history. It is simply a condition, and therefore does not need to be treated with shame and secrecy. “The social (and sometimes also the medical) system by which we treat parents of ‘different’ children as pitiful or shameful is a system that harms those parents and children. People with intersex can grow up as healthy boys and girls, men and women. Their best shot at doing so is when their parents are not made to feel ashamed of themselves or their children,” Dreger said.
Sources of information:
Alice D. Dreger, chair of the Board of Directors, Intersex Society of North America, on FatherMag.com.
C. Winks and A. Semans, The Good Vibrations Guide to Sex.
Intersex South Africa (ISSA) website
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