Sickle-cell diseased kids in Cameroon face death
Sitting on a stool outside her wood-plank house in Cameroon, indifferent to the light rain falling, Diane described how she killed her 5-year-old “sorcerer” son.
The boy had suffered from episodes of severe pain his whole life and was weak and thin, she said. As is the custom in the central African country, she and his father consulted traditional healers known as marabouts about what to do.
“Madam, your child is a sorcerer,” they said. “He came into the world to torture you. He will die one day,” recalled Diane, who asked not to be identified by her real name. The marabouts told her it was useless to seek medical help.
So on a Thursday morning in February last year, at the rooster’s crow, she suffocated her son with an old pillow.
“I kept the pressure on like in the movies and he died,” she said with no sign of remorse. “I killed my child because he was going to die anyway. Before, he was suffering greatly. Now he is at peace.”
What the boy really suffered from was sickle-cell disease, a genetic condition that causes abnormally shaped red blood cells and a variety of complications. It can be treated but not cured. Diane had learned that she and her partner carried the disease trait during a hospital visit with their first child, who died. But she believed the marabouts over the doctors.
“They told us we couldn’t have more children because we would give them the disease. It was false. The marabouts showed us that sickle-cell children came into the world to torture us and spend all our money,” said the frail 32-year-old.
It took seven months for Diane to agree to tell her story, on the condition that her real name and location not be revealed.
Of the 19 people interviewed with sickle-cell disease, 16 said they were called “sorcerers” and “devils” as children, abandoned by their fathers and subjected to “demystification” rituals that could have killed them.
Eleven mothers said they believed their children were sorcerers.
“In Cameroon, sickle-cell disease is synonymous with discrimination, the disease of shame, something mystical,” said Fernand Tekoua, president of the national association of people with sickle-cell disease.
“It is ingrained in habits and in society. Even the family thinks you are worthless and just waiting for your day to die.”
Living dead
Sickle-cell disease is most common in Africa and affects up to 2 percent of the population in tropical countries such as Cameroon, according to the World Health Organization.
The main symptoms are pain attacks which can last up to a week, a susceptibility to infections, and anaemia, which causes weakness and fatigue. Most children with the most severe form die before the age of 5.
Like Diane, other parents interviewed described their children as having been constantly sick since birth.
“Sickle-cell crises are frequent and a week of hospitalization can cost over 200,000 CFA francs (US$350). The majority of families don’t even have money to eat,” said Tekoua of the national association.
“The child with sickle-cell disease is thus seen as the one that ruins the family.”
Although there is no evidence that children with sickle-cell disease are regularly murdered in Cameroon, interviews with doctors, patients and parents suggested that it is possible, and that others die of intentional neglect.
“He’s a monster, he deserves to die,” said one mother in the capital Yaounde of her 9-year-old son.
When she found out he had sickle-cell disease two years ago, her partner abandoned her and she never took the boy to the hospital again.
“I wouldn’t shed a tear at the death of this child that separated me from my husband,” she said.
Several people with the disease said their parents would tell them: “Why did I bring you into the world?
“You shouldn’t be alive. Die and leave us in peace.”
They have been referred to as “living dead,” “revenants,” “disciples of the devil” and “guardians of hell.”
Cameroon’s health ministry estimates that sickle-cell disease is responsible for 16 percent of all deaths of children under 5, said Etoundi Mballa, head of the division for diseases and epidemics.
In 2014, the first treatment center devoted to the disease was opened in a hospital in Cameroon’s second city Douala. But unlike HIV, tuberculosis and malaria programmes, it is not subsidized by the government.
Mballa said the health ministry’s plan for fighting the disease included awareness-raising, free vaccines for certain infections and free iron tablets and antibiotics. The ministry also recommends that young adults get tested for the trait before marrying and having children, he said. But people living with the disease said much more must be done to spread correct information and make treatment affordable.