This is a special edition of our health news briefing only focusing on some two of the most vulnerable categories of physical disability. That is persons with spina bifida and hydrocephalus. There are increasing cases of children born with spina bifida in Uganda ( a congenital disability), but many people even doctors and health workers are not aware of it.
In today’s news briefing we bring you testimonies of parents and children and you will read about how some health workers in Uganda runaway at the sight of babies produced with spina bifida. Such people (health workers) are not even equipped with the necessary information to make referrals for these cases. If professionals in the health sector could behave like this, you know what to expect from the communities: denial of paternity, stigmatization, discrimination, and superstition, among others. This news piece therefore comes in handy to create awareness about these conditions.
Dr. Hamad Lubwama, the spokesperson of Uganda National Action for People with Disabilities says that hydrocephalus in most cases develops after birth or at any time in somebody’s life but is common in children where its impact is also great. In some cases, a child can have both conditions in addition to others such as brain injury, epilepsy, learning and cognitive disability.
Spina bifida is a birth defect that occurs when the bones of the spine (vertebrae) do not form properly around part of the baby’s spinal cord. It can be like a sac of water at any point on the back of the baby or an open sore. In severe cases, it can make walking or daily activities hard to do without help. Many people with it depend on assistive devices such as wheel chairs, walking sticks and calipers.
On the other hand hydrocephalus, also called Water on the Brain, is a condition in which there is an abnormal build up of fluids in the cavities of the brain. The buildup is often caused by an obstruction which prevents proper fluid drainage.
The fluid buildup raises pressure inside the skull which compresses surrounding brain tissue, causing progressive enlargement and softening of the head, convulsions, and brain damage. Hydrocephalus can be fatal if left untreated. Spina bifida and hydrocephalus are very expensive conditions to manage as they require much labour and money.
However, both of these conditions can be prevented but the government is silent on these conditions as it has so far no definite interventions in regard to sensitization, prevention and management of the conditions. Dr. Lubwama says that currently in Uganda it is the civil society organizations that are doing great work in this field but they are also limited with financial and technical resources.