What do you do when your child is born with ambiguous sexual organs? Agnes Kyotalengerire talked to medical experts about this condition and how it can be corrected
When a baby is born, the first question any mother asks is the gender of her child. But that was not the case for 28-year-old Maria Akello. Her child had a small penis in the middle of the labiae.
“I could not tell whether my baby was a boy or a girl. When the baby would pass urine it would flow backwards.
It was traumatising when friends and family would ask about the sex of my baby. It was also difficult to name the baby,” she says.
Medical experts describe the condition as ambiguous genitalia and intersex disorder.
Dr. Stephen Watya, a senior urologist at UROCARE, Kampala, says intersex disorders manifest either internally or externally.
He adds that the external version of the disorder can be detected by looking at the genitals at birth.
The internal disorders, on the other hand, are visible at puberty. One may fail to get menstrual periods, develop breasts, while the boys may get menstrual periods, he says.
As a baby develops, it receives genetic sex commands either to be female (XX) or male (XY). However, sometimes genetic errors occur, resulting into expressions like XO, XXY and XYY, which are neither female nor male, Watya explains.
One cause of this anomaly is the deficiency or excess of particular hormones during pregnancy, which can change the sexual appearance. “One ends up being female even when they are meant to be male,” he says.
The body’s insensitivity to hormones is also responsible for intersex disorders, according to Tom Makumbi, the in-charge of the Support Initiative of People with Congenital Disorders project.
He adds that it happens when the body does not respond in spite of the hormones being released.
Watya warns that use of cosmetics or taking drugs during the first three months of pregnancy is believed to affect a baby’s developing organs.
Makumbi says intersex disorders are a big problem in the country since about 98% of parents blame the condition on witchcraft.
Out of fear of being stigmatised, most people do not talk about the disorder.
He says currently, the support initiative has registered 302 people living with intersex disorders.
Cause of worry
Dr. Fred Kirya, a urology surgeon at Soroti Hospital, says society usually stigmatises people with intersex disorders as well as their parents.
The dilemma sets in as children are playing during the innocent child play; when the children look at each other and realise their genitals are different or at puberty, when the child is developing secondary sexual characteristics.
However, such children can be counselled so that they know they are not alone.
Hormonal replacement therapy
Although the body naturally produces hormones, replacement therapy is done after surgery if the hormones are not adequate enough to support further development of what one wants to achieve, for instance, grow breasts, deepen the voice or work on the skin.
It is best done at puberty though some parents prefer when the child is younger, especially after deciding their gender.
According to Dr. Watya, constructive surgeries, also known as sex reassignment, can correct this disorder.
He says although these have been done in Uganda in the past, there is still a gap because many people are not getting the attention because they lack money.
On average, reconstructive surgery costs sh5m in private hospitals.
Nevertheless, Dr. Ben Khingi, a consultant surgeon working at the plastics and burns unit of Mulago Hospital, recommends that chromosomal tests be done before surgery to find out the individuals genetic make-up.
He explains that surgery is best done when the child is an adolescent because it presents with complications.
Khingi adds that surgery is not recommended for young children because the tissues structures are too tiny to support the procedure.
But that alone is not enough to determine whether the child should be a girl or a boy. It is more of a compromise between surgeons and parents. Prior, the medical team counsels the parents on the advantages and disadvantages before a decision is made,” Khingi says.