Saturday, August 25, 2012

“My baby was born without a gender”

By JOAN THATIAH

When newlywed Cecilia Nungari conceived a little under 10 years ago, she was elated. When she went into labour, she and her husband were thrilled. She had hoped for and had a normal delivery.

During her ultrasound scan earlier in the pregnancy, she had deliberately asked not to be told the sex of the child; they wanted it to be a surprise. So, naturally, the first thing she wanted to know after delivery was whether her newborn was a boy or a girl.

“When I asked, the doctor was quiet for a few moments. Instantly, I knew that something was wrong with my baby. The hushed murmurs amongst the nurses heightened my anxiety,” she recalls.

“Then he calmly explained that the baby was healthy, but they weren’t sure of the sex and that some tests would be required to establish the baby’s genetic sex.”

Unpleasant surprise

Cecilia later learned that her newborn had ambiguous genitalia. Instead of either typical male or female sexual organs, there was what looked like a small pimple with no opening.

“I was stunned. I had never heard of anything like this. My husband and I didn’t know how to explain it to the friends and relatives who kept calling and visiting the hospital,” the mother of two recalls.

Ambiguous genitalia is a birth defect where the outer genitals do not have the typical appearance of either a boy or a girl, making it difficult to easily identify an infant as either male or female.

According to Dr Francis Githae of the Aga Khan University Hospital, this disorder affects approximately one in 4 500 births and can be detected at or shortly after birth, but not before.

It may be caused by hormonal imbalances, chromosomal abnormalities and abnormalities of the tissues that develop into genitals.

Sometimes referred to as an intersex condition, the extent of ambiguity varies from one baby to the next. In some cases, the baby’s external sexual organs do not match their internal organs.

A female may be born with ovaries but male-like external organs. Or a male may be born with undescended testicles and female-like external genitalia. In rare instances, a baby will have both male and female internal organs but ambiguous outer genitalia.

When Cecilia’s baby was two days old, tests revealed that he was genetically male, so they named him George. An initial operation was performed to create an opening for urine. This was followed by two penile elongation surgeries which gave him a functioning micro penis.

George’s condition has had numerous implications on the family’s social life.

“Sexuality is a sensitive issue and such information spreads quickly. A lot people do not understand his condition and we have heard all sorts of things about it. We were even forced to move out of my in-law’s house because rumours said that this was the reason for George’s condition.”

Cecilia confides that the situation has strained her marriage. It nearly went belly up, but she and her husband realised that they needed to be united for their son.

“Then there was the fear of a repeat of that experience. It took us six and half years to come round to the idea of having another baby,” she shares.

It was a huge relief when their second son, David, was born without any defects.

George has good days and bad days. His parents make a conscious effort to educate him about his condition and try to get him to understand that each person is different. In spite of that, the nine year old is shy, and has difficulties interacting with his age mates.

“In school, he spends most of his free time in class and he will not go to the toilet with the others. Luckily his class teacher knows about his condition and gives him individual attention,” Cecilia says.

Cecilia admits that she worries about how he will pull through when he reaches puberty and when she will have to talk to him about his infertility.

“We will cross the bridge when we get there,” she says.

Go to www.nation.co.ke to view conversations with doctors on what gender assignment operations cost, where to find one, and how to recover.

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