Blessings Chelo is a baby girl of 14 months who lives on a farm with her parents in the village of Chongwe. Blessings suffers from Spina bifida, a congenital anomaly (commonly referred to as a birth defect ) in which the spinal column does not develop normally during the first weeks of pregnancy, and encountered some difficulties in her movements. Her mother decided to go to the University Teaching Hospital (UTH) in Lusaka, a two hours’ drive from home, to search for a treatment for her daughter. During the orthopedic consultation the rehabilitation team identified the physical
impairment and referred Blessings to the orthotic department for an assistive device.
At the hospital she received comprehensive and detailed information about her daughter’s birth defect and Blessings was fitted with two orthotic devices to help her stand and move around. The assistive device, coupled with appropriate rehabilitation services will allow her to walk freely, and enables her to learn to live and move as well as possible with her disability. She will play and learn like other children, go to school and be free to do whatever she likes.
Her mother said: “I want to give my daughter every chance to live a normal life, go to school, make friends and run around! I notice that thanks to her orthotics she can move around on her own and grow up almost normally.”
Every year, more than 300,000 children like Blessings are born with neural tube defects, resulting in approximately 88,000 deaths. Although in developed countries the risks of congenital deformity have been greatly reduced thanks to the intake of folic acid before and during pregnancy, in low- and middle-oncome countries, the number of cases unfortunately remains very high. In fact, 29% of neonatal deaths are due to apparent birth defects.
In Zambia, depending on the source, 10 to 15% of the population suffers from a disability. According to the 2006 SINTEF study, 14% of the disabilities are congenital and the resulting disabilities go alongside with lower rates of school enrollment and economic participation. In fact, 24% of children with disabilities never attend school compared to 9% of children without disabilities. Less likely to go to school and less educated, children with disabilities, once they are adults, face similar barriers to socio-economic participation: 55% of people with disabilities are unemployed compared to 42% of people without disabilities.
Many consequences of congenital deformity could be avoided and quality of life could be significantly improved with appropriate medical care and rehabilitation services. Awareness and prevention campaigns to extend the prescription of folic acid to pregnant women, coupled with lobbying the relevant authorities for an effective and accessible public health system are needed to reduce the rate of birth defect. In parallel, it is essential to set up a functioning physical rehabilitation system accessible and affordable for people with disabilities in general. Services, facilities and institutions such as public transport, workplace, banks, places of worship, health care facilities and schools are often not accessible for people with disabilities but there is a real need for more research into the everyday lives of people with disabilities in Zambia.