Stigma adds agony to family with physically impaired children

Cheserem Bogoria (right) with his wife Tango Kipruto and their children Gideon Cheserem and Emily Cheptoi who are physically and mentally disabled.

By Mercy Kahenda

Mogotio, Kenya: As we enter the homestead in Kaptonai village, Mogotio District, a boy sees us and disappears into the bush howling.

His mother Tango Kipruto reveals her son Gideon Cheserem is afraid of motorcycles and vehicles.

She then goes after him in the nearby bush as we wait. She calls his name but the child does not respond.

“My son is scared of motorcycles because of the helmets the riders wear. He is also afraid of cars and that is why he disappeared,” says Kipruto. To avoid scaring the boy away completely, our driver parks the vehicle a distance  from the homestead as Kipruto calls her son’s name in vain.

The boy’s younger sister, Emily Cheptoi, however, is cheerful and welcomes us with a tin of water. She bows down as a sign of respect. We give her bananas,  and she runs to open the door of their grass-thatched house for us. Despite not attending school, the girl, 13, shows interest in education by scribbling on papers.

After about two hours, Cheserem is brought back by his mother.

“He left here with his clothes intact, but they are now torn. Any time I give him clothes, he tears them,” she says.  Family members, including his father, call out to Chererem as he tries to familiarise himself with us.

The two children, Cheserem, 26 and Cheptoi are suffering from a debilitating disorder that has stunted their growth and development.

While the girl can speak, Cheserem cannot. He only communicates by lifting his arms although none of his family members understands him.

“The only communication I understand from my son are his cries when hungry or angered,” she says.

He also lies down and crawls on his stomach. Her mother says Cheserem spends most of his time in the forest, even at night when he escapes from home. “My son will sleep in the forest if no one goes after him,” reveals the worried mother.

The family has eight children. Six are physically and psychologically fit but the two have ape-like features.

Kipruto says the condition of her children has placed the family in isolation. They did not enjoy their childhood because other children kept away from them because of their physical appearance.

Scared Children

Cheptoi, the seventh born, was enrolled at Nyaleibuch Primary School in 2002 but was forced to leave because other children were afraid of her - they said she looked like an animal.

Cheptoi’s father Cheserem Bogoria says children kept away from his daughter and as a result, the other parents transferred their children out of the school.

“My girl is interested in education but after enrolling her in nursery, other children discriminated against her saying she behaved like an animal,”  Bogoria says. Teachers advised him to take her to a special needs school.

 The goat rearing and small-scale maize farmer says he could not afford to do so.

“Teachers told me it would be better for my daughter to go to a special needs school where she would easily cope with children with similar conditions,” says Bogoria.

Kipruto’s mother says the condition of the children forces her to be at home all the time to keep an eye on them because they can get lost. “My two children need constant care because they don’t know how to get home once they leave,” she says. “Their condition limits my operations because I do everything, including bathing them, as their father looks after goats in the bushes,” says the mother. She says the children were born normal. She received both antenatal and postnatal care and was informed that they were fine.

“My children were born normal. I took them to the clinic after birth and no abnormalities were discovered,” she says.

The family is now appealing to well wishers to help them diagnose the condition of their children and help them attend special needs schools.

“We do not know how to assist our two children because of lack of finances and counselling on how to take care of them,” says the couple.

Dr Cindy Mbati, a medical practitioner at Rift Valley Provincial General Hospital, identifies the condition as microcephaly, which affects neural development and the formation of brain tissue and the skull.

“The children’s heads and skulls are very small because the entire brain tissue is minimal,” says Mbati.

Dr Mbati adds the problem is caused by insufficient iron and folate during pregnancy, which affects brain tissue and skull formation.

According to her, the deficiency causes retarded growth and mental problems if not corrected at an early stage of foetus formation in the womb. She notes the problem is prevalent in regions where mothers consume mostly meat and carbohydrates during pregnancy.

Vegetables, nuts, beans and citrus fruits are advisable food groups for pregnant women and those intending to conceive. Folate is also found in many fortified breakfast cereals and varied vitamin supplements. Good nutrition reduces the risk of having a baby with a serious neural tube defect at birth.

Folate Is Essential

“Green leafy vegetables are important while a woman is expecting because they are rich in iron that is needed during pregnancy,” she advises.

Dr Mbati reveals the condition can be prevented by attending a regular antenatal clinic for ultra-sounds to find out if the baby’s organs are developing properly, especially after 12 weeks of pregnancy. “Neural tube defects develop in the first 28 days after conception, before a woman realises she is pregnant.

Women of childbearing age are advised to take 400 micrograms of folate each day while trying to conceive, and continue taking the dose for the first 12 weeks of pregnancy,” says the doctor.

Mbati advises that a woman who has had a child with a neural tube defect should discuss the appropriate dose of folate acid with her doctor before her next pregnancy. She also advises women of childbearing age to ensure they take folate supplements for two to three years before they conceive.

“Women require a lot of iron and folate during pregnancy. Taking these supplements early prevents infection of diseases in the new born,” she advises. Low levels of folate can also lead to homocysteine accumulation. DNA synthesis and repair can also be impaired and this could lead to cancer.