Hope, Health for Children With Spina Bifida

Ambrose Ganshanga, 29, has helped more than 700 children in Uganda.
Ambrose Ganshanga, 29, is an occupational therapist in Uganda. He's helped more than 700 children born with spina bifida and hydrocephalus live fuller lives.
Nov 16, 2012· 2 MIN READ· COMMENTS

Born with spina bifida, two-year-old Justice was abandoned by her mother in Uganda. The birth defect is often viewed as a curse there; parents are sometimes advised by the uneducated that nothing can be done. They are sometimes told to take the child home and wait for her to die.

Justice's story has a happy ending, however. In recent days, her life has turned around for the better. A couple who received education in how to care for a child with the birth defect is now fostering her in their home.

Someday, Justice and hundreds of other children in Uganda can thank a lanky, 29-year-old occupational therapist named Ambrose Ganshanga for their good fortune.

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Since 2008, he has been working in a Ugandan community-based rehabilitation center, the Organized Useful Rehabilitation Services (OURS). Ganshanga completed a course in the rehabilitation field at the prestigious Karolinska Institute in Stockholm the year before.

In 2010, the World Health Organization released its new guidelines on this kind of local care, encouraging professionals like Ganshanga to help families like Justice's.

Since his first day, Ganshanga has helped more than 700 children and their families. Some have spina bifida, a birth defect in which the spinal column does not develop. Paralysis of the legs as well as bladder and bowel problems can result. Others have hydrocephalus, in which fluid inside the head builds up and the skull expands. Convulsions, mental disability and vision problems can occur.

Besides helping the children get practical services—rehabilitation and, in some cases, surgery—he has convinced some families that the birth defects are not curses.

Still, Ganshanga has his work cut out for him. The outlook for the defect is grim without treatment and care. According to a recent study, the death rate among Ugandan children under age five with spina bifida was 37 percent. That's about two and a half times more than that of the general population.

However, when the researchers looked at children living in areas with programs like the one Ganshanga works in, the death rate dropped to 16 percent pretty close to unaffected children of the same age.

Ganshanga works long hours but sees progress. There is more awareness of the conditions, he tells TakePart.

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"I have also created hope among parents that children with spina bifida/hydrocephalus can have a better life," he says. "Most of them used to die when still young."

Ganshanga starts his day at 6 a.m. After breakfast and exercise with his wife, he travels to the rehabilitation center. His days are filled with meetings with families, assessing children's needs, and educating family members.

Slowly, he is seeing the misconceptions about the disease disappear. Ganshanga counseled one father who left his wife after she had given birth to a daughter with spina bifida. He was unable to cope with the condition. "Later, after my visit, the father went back to the in-laws to ask for forgiveness and was reunited with the wife and the child," he tells TakePart.

Ganshanga often educates families about how to handle continence problems and other issues. He urges all family members to get involved. He advises them about other options, from treating infections to surgery, if necessary. He sometimes meets with schools to help them accommodate the children.

Four years after he began this mission, all the children he's helped remain on his mind. There's Moussa, 10, who had lived in isolation for years before getting treatment. And Chisa, 8, who will go to school for the first time, thanks to handling her continence problem.

Ganshanga looks ahead to even more progress. "On an average day I have 12 children to attend to at the center," he says. Some days he helps 70.

The roster of children he's helped is growing steadily. "Currently I have 244 children with spina bifida and 458 hydrocephalus in follow-up," he says.

Ganshanga's motto comes through loud and clear to everyone he meets: "Disability is not inability."

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