BY WAMBUI NDONGA
NAIROBI, Kenya, Jun 17 – In many parts of Africa, albinos are hunted down for black magic or raped for the misconception that one can be cured of HIV/AIDS.
Children living with the condition are often seen as bad omens and their mothers have to cope with the stigma that comes from these misconceptions.
In Kenya the situation is not much different with statistics indicating that over 70 percent of women who give birth to children with albinism are deserted by their partners.
When Carol gave birth to her son in 2008 she had no idea he had albinism. And when the medics presented him to her, she broke down.
“I refused him saying he wasn’t mine and that the hospital staff had swapped him with another baby. So because of that denial he was taken away from me for a whole week and I had to be counseled,” she recalls.
“I was even asked to give him up for adoption but after the counseling sessions it started hitting home that he was my son,” she explains.
The mother of two couldn’t understand how her new baby developed the condition while the first born was normal. When she finally took her child home, her neighbours ostracised her.
“Some would ask if he was really mine and it wasn’t very easy because I was still struggling with the same idea myself,” she says. “Even now when I walk with him in the street people start making monetary references to his condition and it’s very inhuman.”
Carol and her husband had separated when she was three months pregnant and when he finally saw him, he immediately demanded a DNA test.
“I was ready to have my son take the DNA test but I don’t think I want that anymore. Deep down I know my ex knows that my son is his but if he doesn’t want to accept him I won’t force him to,” she explains.
Carol’s ex-husband blames her for their child’s albinism and only supports the dark skinned one.
Carol’s account is not unique.
Margaret learnt of her child’s albinism from her midwife’s reaction. But unlike Carol, she remained calm knowing that she had her husband’s support.
“The midwife told me that I had given birth to a ‘mzungu’ and advised me to take him to Kenyatta National Hospital where his blood could be changed and he would become normal,” she recalls.
But when she took her son home the insults started streaming in. Her neighbours isolated her and some asked her to get rid of her son, saying he would bring bad luck to them.
“Some of the women who came to see my baby asked me why I gave birth to such a child; others argued that he needed to die because he would bring curses to the whole neighborhood,” she explains.
“My son’s condition was often used to ridicule me and women used it to mock me when we had quarrels. At some point I couldn’t take it and was always crying asking God why he was punishing me,” she says.
Margaret’s problems were far from over. They had just begun. Her husband deserted them.
That was the point when Margaret, who lives in Kibera’s vast informal settlement, knew that she had to remain strong for her four children.
“My husband would come home on some days and then disappear. Soon the periodic visits stopped and he stopped taking my calls. So I picked myself up and slowly started moving on,” she says. “But it wasn’t easy because my neighbors blamed my son for our separation and I remember developing ulcers at that point but I am okay now. Life makes you harder.”
Although 24-year-old Diana also faced discrimination from her neighbours when she gave birth to her son, her husband remained by her side.
Some of her neighbors would mock her that her albino son smelt like fish while others wouldn’t dare touch him.
“At some point, all those things got to me and I started getting stressed out but I’m thankful because my husband was there for me,” she says.
Although she didn’t panic when her midwife broke the news, Diana recalls that the doctor’s reaction was unsettling.
“I remember one of the doctors blurting out my son’s condition in the ward. He seemed surprised and after that other doctors came to me asking who in my family had albinism,” she says.
Kenya Parents Albinism Support Group coordinator Jane Waithera notes that many women are deserted by their partners once they give birth to children with albinism.
Waithera, an albino, was raised by her grandmother after being abandoned by both parents. She says many women are accused of being unfaithful by their spouses once they give birth to children living with albinism.
“We even have cases where women get a child with albinism after having some that were dark skinned and then the husband packs and leaves with the dark skinned ones. In fact, you find that even the 30 percent that is living with their spouses endured such problems in the beginning,” she notes.
Waithera argues that there is need to increase awareness on albinism in order to correct all the misconceptions.
“When my mom got me she was shocked and she didn’t even understand why she got me because my father was dark skinned. The society didn’t spare her as well, saying it was because of witchcraft and that I was a curse to my family,” she says.
She adds that birth attendants ought to be sensitised in handling children with albinism together with their parents.
“Sometimes mothers even feel like the child was not theirs just because of the manner in which the medical attendants treated them. The nurses need to be educated on albinism as well,” she says.
These sentiments are shared by Carol, Margaret and Diana who all feel that the wrong perceptions should be corrected.
Carol adds that schools should also treat children with albinism with some decency.
“Teachers need to know about this condition so that they can know how to deal with them. Like when I took my son to school the first day the teacher asked me to buy gloves so that she could use them to apply sunscreen on my son,” she explains sadly.
“These things are sad but they are happening so there needs to be education,” she concludes.
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