A change in policy could play a big role in reducing the cases of spina bifida and hydrocephalus in Uganda. The Uganda National Bureau of Standards is creating more awareness of food fortification and training food inspectors in anticipation of the day the government will make food fortification mandatory.
Becoming a mother is one of nature's gifts to a woman, but the joy can be turned into weeping, as was the case with Shamim Nakibuuka a 20-year-old, first time mother whose child was born with the birth defects spina bifida and hydrocephalus.
Spina Bifida is a common disabling birth defect in which the foetal spinal column does not close completely. This causes nerve damage, paralysis or, in 85 per cent of children with spina bifida, hydrocephalus, a buildup of cerebrospinal fluid in the brain. This fluid cushions the brain but when it is too much, it puts pressure on the brain. An unusually large head is the first sign of congenital hydrocephalus.
There are two kinds of hydrocephalus; the congenital type is present at birth and the other is acquired hydrocephalus, which can occur at any age and is caused by infections, tumors, bleeding in the brain and injuries.
Shamim Nakibuuka's daughter, Lisha Nakiyingi, was born three months ago with the unusually big head and a spinal colon that was not completely closed. She had congenital hydrocephalus, which in many countries arises from infections during the first months of pregnancy.
In Uganda, about 60 per cent of hydrocephalus cases arise from infections after birth, according to Dr Derek Johnson, the executive director, CURE Children's Hospital of Uganda based in Mbale.
Dr Johnson says that experts think the causes could be bacteria infections, especially for women who do not deliver babies from health centres and cultural practices like putting cow dung on the umbrical cord to dry. But malaria also may be a cause. He said further research is needed to provide an answer and once they get it, Uganda could be rid of spina bifida cases because the postnatal type is easier to prevent.
Mr William Ssali the Director of Food Science Research in the Ministry of health says that 70 per cent of cases of neural tube defects can be prevented by adequate intake of folic acid immediately before and in early pregnancy. "The body needs very little folic acids but lack of these micronutrients can cause disastrous effects," Ssali says. He says that a rigorous programme of public education and fortification of popular foods with folic acid decreases the rate of neural tube defects by about 20 per cent
Prevention offers much greater rewards
Pregnant women can be encouraged to eat foods rich in folic acid, a vitamin that is needed for cell growth and development of the baby. Folic acid is found in green leafy vegetables, chicken and beef liver, asparagus, papaya, broccoli and eggs.
At the national level, fortifying food with folic acid would be an answer to the problem. Foods like vegetable oil, maize and wheat flour, milk and related products, complementary weaning foods, sugar and beverages can be fortified by adding minerals to them.
Uganda should make it mandatory for some foods to be fortified, says Dr. Johnson. Currently, fortification is voluntary, and food suppliers may be reluctant to act because it adds costs to their businesses. "At the end of the day, businesses have to be profitable. But we need to try to make it mandatory for commonly consumed foods to be fortified. That way we shall get rid of so many diseases," says Dr Elizabeth Madraa, head of food fortification programme at the Ministry of Health.
Some manufacturers are acting voluntarily, though. The biggest vegetable oil producers, Bidco vegetable oil and Mukwano Industries, are fortifying their products with folic acid. They account for at least 80 per cent of all vegetable oil in Uganda.
In Africa, and particularly Uganda, there is lack of awareness about use of folic acid or vitamin B9. "It was the first time this happened in my family. I don't know what caused it, but people told me it was witchcraft, use of family planning commodities," said Nakibuuka now attending to her baby with hydrocephalus and spina bifida who will be discharged soon. Studies have shown that if taken before conception, folic acid can reduce a baby's risk of neural birth defects by 50 per cent.
Officials at CURE hospital say a change of policy can play a role in reducing the infection rates of spina bifida and hydrocephalus in Uganda. Training for both teachers and nurses should incorporate care for disabled children for teachers and nutrition for nurses, says Florence Kalikwani, nurse manager at CURE.
Currently, nursing schools are training nurses to give mothers folic acid when they are pregnant. But that is too late, according to Kalikwani. "The Ministry for Health should change the syllabus so that everybody gets to know how to go about it," she says. "A policy to change teachers' training so that they have disability training for children who are affected should also be implemented by the ministry of education," she adds.
Mr William Ssali, also a consultant with the Ministry of Health MOH-Gain food fortification project, says government should target institutions like schools, prisons, the army, and hospitals to be supplied with foods that are fortified. Most of these use maize flour as a staple food. The MOH-GAIN project has partnered with World Food programme, which now has a policy to supply only fortified foods.
The Uganda National Bureau of Standards is creating more awareness and training food inspectors in anticipation of the day the government will make food fortification mandatory. David Eboku, head of foods and agricultural standards for UNBS, says the bureau is drafting regulations that will make fortification of some foods mandatory. "The inspectors should be able to know if the food is really fortified."
If these efforts succeed, fewer babies will have to suffer as little Lisha Nakiyingi has. For now, her condition is stable: the spinal protrusion on her back has been closed and the fluid that had enlarged her head has been drained. But her future is uncertain. It is a sad story about a condition that in many cases could be prevented, especially in Uganda, where infections are contracted after birth.