“We request Parliament to enact a law that enforces fortification of food supplements with Iron and folic acid in maize, wheat, millet flour and vegetable cooking oils by all food processors and packers countrywide to reduce Spina Bifida and Hydrocephalus in children”
MATERNAL AND NEONATAL HEALTH
Mothers of children born with Spina Bifida and Hydrocephalus (SBH) condition want Parliament to enact a law making it mandatory for food processors to include iron and folic acid supplementation to curtail chances of getting the disease.
Under their umbrella body Spina Bifida and Hydrocephalus Awareness Net Work Uganda (SHYNEA) the mothers said the intervention from government has been long overdue.
"We request Parliament to enact a law that enforces fortification of food supplements with Iron and folic acid in maize, wheat, millet flour and vegetable cooking oils by all food processors and packers countrywide to reduce Spina Bifida and Hydrocephalus in children"
During their general annual meeting at Namirembe Resource Centre, Kampala Ruth Nalugya, the director of SHYNEA expressed concern on the lack of folic acid in many manufactured foods which increases the risk of Spina bifida and other neural tube defect, adding that it is the reason vitamin supplements are given to expectant mothers because they contain folic acid.
Nalugya also noted that Cure Children's Hospital in Mbale renown for treating children with SBH attends to between 1500-1800 new cases annually.
According to internet sources, folic acid is a type of Vitamin B that is normally found in foods such as dried beans, peas, whole wheat products, liver among other foods. This helps the body produce and maintain new cells.
The mothers while attending the meeting said they face quite a number of challenges such as husbands fleeing from homes on learning that the women have given birth to children with SBH.
They further intimated that taking care of such children is a full-time job, leaving them with no space and time to do other work.
Dr. Isaac Kajja, the head of the orthopedic surgery department Mulago National Referral Hospital in an interview explained that SBH is a congenital problem, presented before birth, and it is a medical condition caused by the incomplete closure of the embryonic neural tube. He said it is a neural tube defect.
"Hydrocephalus is a condition in which there is an accumulation of cerebrospinal fluid within the brain, causing increased pressure inside the skull. Among the theories SBH can occur due to birth defects such as infections, lack of enough folic acid, alcoholism, smoking, uncontrolled diabetes among others." Kajja explained.
Kajja also explained that lack of iron and folic acid amongst pregnant mothers is one of the theories fronted for the causes of SBH, a condition where the bones in the vertebral column do not fully cover the spinal cord, leaving it exposed.
"Symptoms range from mild to severe, and it can affect physical and intellectual development," he said.
Mothers speak out
Margeret Kobusingye a resident of Masaka said: "Children living with SBH cannot control their bladders and bowel because the messages between the brain and the bladder and bowel are broken, which results in loss of sensation.
"When these children attend school teachers don't understand their needs and health workers keep referring them back to hospitals where they were operated from, they are marginalised ." Kobusingye said.
Mercy Kirabo, who has a child with the same condition and a member of SHYNEA, donated one of her residential houses in Entebbe municipality that will work as a center for treatments, counseling services, accommodation to victims of SBH.
"We are stigmatised to use public means of transport because taxi operators feel we take a lot of their time and space whenever we move with the children," Kirabo said.