In the distance, the faint sound of a marching band can be heard growing louder and louder as it creeps through the city. People begin to look around to see where it is coming from. Then, emerging from the traffic, children march holding signs and banners celebrating World Spina Bifida and Hydrocephalus Day. They do not march alone. Beside them are parents and fellow patient support group members. They are marching in hopes of raising awareness about hydrocephalus and spina bifida, not just along city streets of the nation’s capital city of Kampala, but across the country in rural communities and villages.
World Spina Bifida and Hydrocephalus Day is an international event celebrated around the world on October 25. Uganda’s celebration took place at the KCCA Grounds in Lugogo, Kampala. Families from across the country came out to help spread the word about the causes and treatment of these conditions. CURE partnered with the Spina Bifida and Hydrocephalus Association of Uganda (SHAU) as well as regional parent support groups to bring together a large group of children and parents to recognize the day. It is estimated there were over 700 people who attended the event, up from 400 the year before. Key speeches were delivered during the ceremony from CURE staff, organizers from support groups, and Dr. Jackson Amone, who is the Commissioner from the Ministry of Health. He pledged to continue to work on expanding access to medical care for children with hydrocephalus and spina bifida. Along with speeches, children gave testimonies, sang, danced, and recited poetry. There was also a tent full of displays about foods with high folic acid, tools and accessories to help those with disabilities, and resources about inclusive schools.
“This year the theme was promoting inclusive development for persons with spina bifida and hydrocephalus,” said Rebecca, a senior social worker at CURE Uganda. “Our children need a special place for CIC (clean intermittent catheterization). So, some small things have excluded our children for social services offered by the government. We wanted to bring it out clearly that our children need to be included in the schools and in the hospitals. Sometimes, if they go to any other hospital, they are sent away. Why? Because of stigmas about these children.”
“There are many people who still don’t know about these conditions. There are many who are still hiding their children. There are many who don’t know anything about folic acid,” said Rebecaa. “So, on this day, we want people to know about hydrocephalus and spina bifida. What causes it and how it can be prevented. We also want to raise awareness that services can be found here at CURE and to help people understand the causes. Many people think it’s associated with family planning, witchcraft, or other superstitions. So, we want people to know it has nothing to do with these things, but rather, they are medical conditions that can be prevented and treated.”
Dr. Michael Ogwal, CURE Uganda’s Medical Officer, was one of two representatives from the hospital who spoke at the event. His aim was to teach about the medical causes and treatments for both conditions.
“They need to understand that these conditions do exist and it can happen to anyone. As a parent, you can have a child with spina bifida or you can have a child with hydrocephalus,” said Dr. Ogwal. “To some extent, they can be prevented by measures that are known already: taking your folic acid pre-conception. You could avoid 70 percent of the spina bifida cases, but there is still the other 30 percent that it doesn’t matter if you have taken your folic acid.”
“For hydrocephalus, we all have water in our brains. Sometimes, something goes wrong. You may be producing far too much or not absorbing enough, or the part responsible for transmitting the water gets an issue. About 57 percent of the time, hydrocephalus is brought about by infections due to unsafe birth practices such as giving birth from home. The child acquires an infection and the health workers do not treat it adequately. They give the child syrups, and, yet, he should actually be admitted (into the hospital) getting a 14-day course of IV medications. Eventually, they have to pay a price for the mother giving birth at home or failure of the health workers who didn’t treat the infection adequately,” said Dr. Michael.
“Once you have these conditions, the most important thing is early treatment. For spina bifida, there is a connection between the spinal cord and the brain. If you don’t treat early infections, it will get into the brain via the lesion on the back. For hydrocephalus, if you don’t treat early, it is more than just a big head. What worries us is the continued pressure on the brain, which is going to badly affect the child’s brain development. If the child doesn’t get treatment, 98 percent of the time they will end up dying. Those who delay treatment and survive beyond two years are functionally impaired. Their milestones are delayed. The function as far as speech, the motor, the cognitive, is badly affected,” said Dr. Michael.
Tim Erickson, the Executive Director of CURE Uganda, addressed the crowd and encouraged the families that each life is a gift from God and that their children are invaluable as human beings made in the image of God. He pledged the hospital will continue to do all it can to work with the Ministry of Health so that more children can receive life-saving surgeries for these conditions at CURE Uganda. Currently, the hospital provides nearly 1,200 brain surgeries per year for children with these neurological conditions. Tim emphasized that the children should be given the same opportunities as those without medical conditions. Tim thanked the parents for their perseverance in the face of many challenges.
Overall, the day was a great success with nearly double in attendance from the previous year and a pledge from the Ministry of Health to continue to partner more with CURE Uganda in the years ahead.