She delivered a healthy baby boy but three years later little Owen Otieno was taken ill with meningitis. He was then diagnosed autistic.
For two months, mother and baby lay their hopes with the medical staff at the Kenyatta National Hospital (KNH), Nairobi, Kenya. But Owen’s mother Margaret Sambile later learnt the hospital could not cope with the number of patients streaming into the autism ward.
This is why the 44-year-old single mother found herself back at her Mathare Area Two home after being informed that she and a couple of other mothers were to be discharged from KNH to create space for new patients.
Her two month stretch at KNH proved to be an excuse for his husband to desert. According to details that Sambile collected from neighbors, her husband left after learning he had fathered an autistic child.
Alone and taking care of four children including Otieno, life was difficult for Sambile. Looking back she says she cannot figure how she pulled through to celebrate Otieno’s eighth birthday this year. But determination and support from friends and relatives as well as special education professionals has enabled her to appreciate the challenges of raising an autistic child.
The cost of living has gone up, she says, and like many Kenyan homes with an autistic member, the big question is often how to split the little revenue available to foot medical and food bills.
“Most of the expenses are spent on Otieno’s special diet,” says Sambile. “I cannot sustain a full time job because I have to keep close watch over him.”
Now living in a rented house, which she pays Ksh. 2,900, for, Sambile is jobless. Even the spirited efforts she makes by asking for soft loans from friends to try a second hand business has left her with accumulated debts. A Khs. 24,000 bill is also waiting to be paid at KNH.
Sambile says she has tried to enrol Otieno in a special school but in vain. She says she is hopeful that one day better support for autistic children in Kenya may be provided.
Such a wish may not be far from being realized, if a new technology by the Africa Relief and Health Programme (ARHP) is adopted. ARHP is in its final trials of technology designed to detect autism from the time a mother conceives, allowing support to be provided when the baby is as young as five months, officials say.
Through a molecular technology that analyses blood samples obtained from an expectant mother, physicians say it will now be possible to trace ‘strains’ of autism in an unborn baby.
“The whole concept is to divert the genes and hormones during the early stages of child development,” explains Dr. Maxwell Ogutu, ARHP’s executive director.
According to Dr. Ogutu, the technology uses a reversal approach, which notes changes in the samples when a foreign material is detected.
“Once we find a trace of autism in the blood sample we are able to restructure the gene. The younger the baby the better but the older it gets the more the situation becomes difficult to manage,” says Dr. Ogutu.
According to him, the technology is has a proven track record in Europe of ‘containing’ autism through early detection and support, with a success rate of around 86%.
The research trial, the first of its kind in Africa, is being conducted in conjunction with the University of Nairobi and Kenya Medical Research Institute (KEMRI). Other partners include USAID, the Norwegian government and the Bill and Melinda Gates Foundation.
But the Autism Society of Kenya (ASK) warned that physicians should tread carefully with emerging technologies, adding that the results of trials on the technology done in the USA have not been shared.
Felicity Nyambura of ASK says such a technology could prove to be useful to thousands of mothers but cautions that Kenya does not even have enough doctors to deal with the health condition.
“As ASK we are asking for caution since in Kenya we only have four doctors at KNH who are able to do a rapid assessment and diagnose autism,” says Nyambura.
In Nairobi alone, she says, at least ten cases of autism are diagnosed every month. The Educational Assessment Recourse Center (EARC) says the number of cases that go unreported r due to widespread stigma could make this figure much higher.
“We are worried because parents still hide their autistic children,” says the EARC’s Mwakachola.
The Autism Society of America (ASA) defines autism as ‘a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder’.
It affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.
