Spina Bifida and Hydrocephalus which are lifelong, disabling conditions yet preventable through various interventions during the first trimester of pregnancy, continue to affect millions across the globe, a dire situation that calls for solutions.

Spina Bifida is a treatable spinal cord abnormality, that if left untreated, many children end up developing hydrocephalus, a build-up of fluid on the brain that necessitates the use of a shunt to drain in order to avoid brain damage.

Although the exact cause of spina bifida is not clear, it has been linked to nutritional and environmental factors such as the use of certain medications and low folic acid intake during pregnancy, as well as having a family history of the condition.

Acknowledging the stigma perpetuated by health workers, Esther Njoki, a nurse at Thika Level 5, said it was crucial to train health workers on how to handle mothers who deliver affected children and educate the mothers on the importance of folic acid. She noted that often, the folic acid tablets may induce nausea leading to abandoning but added that green leafy vegetables could still fill in that gap.

 

This was part of the advocacy messages delivered during World Hydrocephalus and Spina Bifida Day, observed at Thika Level 5 Hospital on Tuesday, October 25, 2022.

The event organized by students from the School of Medicine JKUAT brought together health professionals, parents and children affected by the condition in a bid to raise awareness.

Merab Imela, a survivor and a teacher from Joytown Secondary School has championed advocacy on the importance of early proper care to avoid secondary infections from this condition, with many of the mentees present at the event applauding her for the effort. She further added that.

Loise Waringa, who was born to teenage parents recounted her challenges with the condition. When she was operated on at the age of seven, no information was given and subsequent challenges such as sores and incontinence made school life difficult. However, mentors like Merab made the journey easier and she has joined that path to encourage others suffering from the same.

It was crucial to train health workers on how to handle mothers who deliver affected children and educate the mothers on the importance of folic acid. She noted that often, the folic acid tablets may induce nausea leading to abandoning but added that green leafy vegetables could still fill in that gap.

 

“I do not encourage people to enrol disabled children in special schools. I also pray that society can embrace these children and bring them to school. We can only achieve inclusion when we allow these children to integrate with society at the basic education level,” said Ms. Imela.

Esther Njoki, a nurse at Thika Level 5, said health personnel must be trained on how to deal with mothers who give birth to affected new-borns. Similarly, mothers must be educated on the value of folic acid. She pointed out that while folic acid pills frequently trigger nausea, green leafy vegetables could still supplement.

According to Dr. Sylvia Shitsama a Neurology Surgeon and Lecturer at JKUAT, the National Hospital Insurance Fund needs to expand their cover to include services such as physiotherapy and psychological support, which are critical in managing the effects of the lifelong disabilities associated with Spina Bifida and Hydrocephalus, a biweekly expense that many people cannot afford to pay out of pocket.

Dr. Shitsama while lauding other progressive gains made through food fortification with folic acid, also urged stakeholders to create favourable policies that would ensure that mothers have access to the vital sources of this important micronutrient, and thus mitigate this and other health conditions.

Speaking during the event, Dr. Jared Ondieki, Chairman Department of Surgery JKUAT was appreciative of the community-centric partnerships fostered by JKUAT and Thika Level V Hospital and expressed the hope that this relationship will expand to more projects beyond just ward rotations. He said that by doing this, services, training, and involvement would all be improved.