Four-month old Namande Rhodha was a perfectly healthy baby until she caught meningitis. Her parents, Ronald and Rose, took her to the hospital, one of the best in the country. When they brought her home, Namande had a damaged brain and had lost her eye sight and hearing. To this day, they have no idea of what kind of treatment the hospital gave to their daughter to cause such extreme disabilities.
Today, Namande is nine. All these years, Ronald and Rose have been experiencing a prolonged night mare. They have four other children, two are older than Namande and two are younger. They live in Luwero, a small town west of Kasese. To sustain a family of seven has been difficult, so, the matter of paying for specialized treatment and care for Namande has been out of the question. Often, there were tensions between the parents each blaming the other for bringing on this curse. Then there were all kinds of advisors giving all kinds of ideas. Some people urged them to go to a witch doctor. Others advised them to lock up the child in the house. A few folks even advised Ronald to leave Rose and let her care for Namande and the family.
Ronald and Rose paid no heed to these advisors and stuck together. Despite a constant struggle, they continued to look after their daughter as best as they could. But, communication with their daughter has been their biggest challenge. Namande has no language skills or comprehension of sign language. She cries when she is hungry and that is a signal to feed her. Family members have found similar ways to engage in minimal communication with Namande. They have also started learning and using tactile language. But, engaging Namande in conversation remains their major problem.
At first, Rose stayed at home to care for Namande. When the older children were able to bath, feed, change and look after Namande’s daily needs, Rose started attending their small family business. But, she keeps going back and forth from home to business throughout the day to ensure Namande is looked after.
Ronald is on the board of the Uganda Association of Parents with Deaf-Blind Children. Working with this organization has meant a lot. As Ronald told me, before joining the board, they thought that they were the only unfortunate couple who had a child with such severe disabilities. At the association’s meetings, they learned that there were other parents with similar, and even worse challenges. Ronald also advocates and lobbies on behalf of parents. He hopes that the association will be able to secure greater support from various levels of government so that one day, Namande’s care can be improved and, if possible, she can be treated.
This is the second such case I have encountered in last two weeks. I have asked around about what recourse, if any, do parents have in such situations. I understand that there are laws in Uganda for parents to take action against a hospital or a medical practitioner. But, many people, especially those like Rose and Ronald, who live in small towns and villages are either not aware of these laws or do not have the time and money for legal action which can be very long and expensive. So, they simply accept their situation and try to cope with it.