Stories: Living with Spina Bifida

Anifa's Story

Anifa is an 18 month old boy with spina bifida who lives in Nigeria. In the United States, children born with spina bifida often live long and productive lives, even though they face many challenges. In many other countries it is a more difficult road. Read about some Anifa’s challenges.

Anifa is an 18 month old boy who lives in Nigeria. Anifa was born with spina bifida. Like most children with spina bifida, Anifa has no movement of his legs (he is paralyzed) and he has no bowel and bladder control. He works very hard just trying to crawl on his chest.

Anifa lives with his family in a village where there is no primary health center. His mother does not own a stroller and cannot buy diapers. She has to use leaves and paper to keep him clean. She and her husband are doing everything they can for their child, but without proper care, the reality is that Anifa's future is uncertain.

Anifa had to wait until he was nine months old before he had his first back surgery to close the opening in his spine. Imagine that for nine months his spinal cord was exposed, without protection. In the United States, the first surgery for a baby born with spina bifida usually takes place within the first 24 hours of life to avoid infection, other complications, or death. But Anifa had no choice but to wait.

Anifa will likely face lifelong medical challenges associated with his spina bifida, and the financial and emotional impacts that his family will endure are overwhelming. In the United States, children born with spina bifida often live long and productive lives, even though they face many challenges. But, in many other countries, the outlook for children like Anifa is not as positive.