Plight of parenting an intersex child

When his wife was pregnant, they performed a sonogram that revealed they would be having a baby boy. 

A few years down the line, Peter Maingi, now a father of three, says he has gone through too much to handle. His child, now eight, was born intersex. 

"Life changes a lot because you move from being stable and working to constantly being in the hospital," he said. 

James Karanja, alias Mary Waithera, an intersex person, says parents to intersex children also go through their fair share of stigma and depression. 

"My mother could not handle the depression that came with it, and she is mentally disabled now," he said. 

Ryan Muiruri, aka Ruth Wangui, adds some parents are forced to kill their children or abandon them because they think the child is a curse. 

"I was at a vernacular station a few years back and a mother called and opened up about how she had been forced to kill the 'thing' she had given birth to," he said. 

"The husband gave her an ultimatum: either kill the child or he would leave her."

Maingi had vowed to hide the condition of his child from the world so he and his family could live in dignity. 

His child has a variation referred to as mixed gonadal dysgenesis.

Children with this disorder may have one or two gonads (ovaries and testicles), which may be undescended and/or not easy to identify as typical testicles. 

The disorder is a sex developmental disorder, where the gonads are abnormal, with some cells having XY chromosomes and some just a single X (chromosome Y mosaicism). 

This results in a wide range of male or female genitalia that are not typically, or clearly, male or female. 

FEAR OF STIGMA

When Maingi and his wife went for the first surgery, they thought the child had an undescended testicle.

"When the doctor came from surgery, it was so strange because the special doctor said our child did not have a testicle," he said. 

They did a biopsy which revealed the chid had oval-testes on the right side. Initially, the doctors could not identify what was on the left side, only to later inform the new parents that it was an ovary. 

Maingi's wife, who was first to receive the news, collapsed in hospital after the news was revealed to her. When Maingi found out, he was traumatised. 

"The counsellors at the hospital talked to us and told us there were tests we could do to see how best to help the child," he said. 

However, he did not anticipate how much his life would change. While still in hospital, a few attendants told the wife that it would be easier to kill the child.

"However, I told my wife not to kill the child and started studying the condition to understand it better and what needs to be done," he said. 

He was also advised to divorce his wife because children born intersex are considered a curse. 

"I said I would keep people from knowing this situation to save my child, and so that we could live a dignified life," he said. 

Maingi has had to transfer his child from three different schools to protect him from bullies and those curious to "see what is under there". 

He says he is scared for his child because people born intersex are very suicidal due to stigma, social exclusion and ridicule in the community. 

For instance, James and Ryan revealed they have tried to commit suicide several times. 

The father was also worried because intersex persons drop out of school at the onset of puberty and are exposed to many procedures to 'normalise' them. 

FINANCIAL IMPLICATIONS 

Maingi says he has lost so many friends during his eight-year journey.

"If you tell friends to help, they cannot because I was unable to tell them the exact condition of my child," he said. 

The financial implications of seeking treatment and running tests for the child have also seen his property get auctioned by banks for failing to repay loans. 

"The eight years my child is today, my child has been in the hospital for four, and this affected work because you have to attend to the child," he said. 

His wife also developed hypertension and was at one point suicidal. 

"She one time felt that we can commit suicide because she just wanted us to feel like normal people in the society," he said. 

So far, he has spent over Sh4 million in hospital, seeking treatment. 

"When the banks were auctioning us and I tried to explain my child's condition, they said we were pretending because the child to them looked normal," he said. 

Maingi estimates he needs Sh10 million in total to handle the condition so the child can live healthily.

Another challenge faced by Maingi is how to explain to the child the intersex nature. The child once asked him why they were constantly in the hospital and if he would one day be able to urinate 'normally' like the brother. 

"It becomes so difficult but the only thing I have been doing is telling him that I love him and he is special, you are unique and not like any other," he said. 

"However, depending on the age, it is difficult to explain the innermost details because there is the physical and the inner. I have not yet explained the innermost details."

He has also been requested by counsellors to start counselling sessions. 

STAND TO BE COUNTED

On Saturday, Kenya will be the first country in the world to organise and incorporate in its national census a sex marker for intersex persons. 

According to the UN Free and Equal Campaign, an estimated 0.05 to 1.7 per cent of children in every population are born intersex. 

Kenya National Commission on Human Rights commissioner Jedidah Waruhiu pointed out that this would translate to about 23,925 to 813,425 intersex persons in Kenya. This is judging by the Kenya National Bureau of Statistics 2018 population statistical estimates of 47 million people.

Waruhiu urged intersex persons to come out in large numbers and be counted as the outcome will determine the policy and legal reviews that would directly affect their welfare.  

"Being intersex is not being abnormal. It is just the third sex marker," she said.