As Uganda marks and commemorates the World Day on Spina Bifida and Hydrocephalus, menstruating girls and women have been encouraged to take enough folic acid to reduce on chances of producing children suffering from the conditions.
During the event organized by Spina Bifida and Hydrocephalus Association Uganda (SHAU) it was highlighted that there has been an increase in the number of children born with the conditions from ranging from 6000 to 8000 annually.
SHAU Executive Director, Ruth Nalujja revealed that there is an overwhelming cost of treating caring for children born with Spina Bifida and Hydrocephalus which could be avoided if preventive measures are put in place.
“It’s very expensive to maintain the child right from birth because all their care is specialized care which you can’t easily find in any health facilities in Uganda. Imagine we only have three major hospitals one of them being Mulago National referral hospital, Cure Children’s hospital-Mbale and the Regional Referral Hospital of Mbarara,” said Nalujja who is also a mother to a child with Spina bifida.
Nalujja said that the cost of surgery alone doesn’t go below Shs5m and a child may need more than two surgeries which must be carried out immediately after birth.
Nalujja added that once a child is out of theatre after the first surgeries, the child needs to be rehabilitated and the rehabilitation is not a one dimensional or one-way path.
“The child would need Physiotherapy, occupational therapy and Nutritional therapy which are all very costly and the assistive devices that do support them are equally very expensive,” Nalujja said.
Nalujja observed that in case a child is incontinent in that she cannot control the stool and urine, the child will need catheters.
“A child is supposed to catheterize 5 times a day and each time they catheterize, it is recommended that they use one catheter and this goes for at least Shs10, 000. The condition is too costly and can’t be given a definite budget,” Nalujja noted.
She explained that there is hope that this condition can be prevented by 70 percent by taking in enough folic acid by women before and after conception.
Mulago Hospital Deputy Executive Director, Rosemary Byanyima said that it’s difficult to cost the rehabilitation because some of the processes are done in stages and there are several operations that are necessary and in between there are drugs and expensive medication.
“The care is expensive due to the need of supportive or assistive devices like crutches, wheel chairs, artificial limbs, those with incontinence need regular padding which is an inconvenience to the children to themselves and an expense to the family,” Dr. Byanyima said.
The Executive Director Katalemwa Cheshire Home, Samalie Matovu Nandala used the opportunity to appeal to government to consider extending support to organisations that offer help to people with disabilities across the country.
Matovu said that more funding is needed in supporting the making of assistive devices which are expensive with the least costing Shs600, 000.
Why Folic Acid is so Important
Folic (Vitamin B9) plays a very significant role in the growth and development of the cells in human body and in the formation of DNA. Folic acid is essential to create the very building blocks for life which is why it becomes particularly important in the very early days of pregnancy when cell division is at its most rapid.
Therefore, women’s bodies need extra folic acid both before conception and during early pregnancy to support the development of their babies.