In the developed world, a cerebral palsy diagnosis does not necessarily imply intellectual disability. In fact, many individuals with cerebral palsy are incredibly intelligent individuals that are limited only by impaired motor function. Cerebral palsy is caused by brain damage that can occur prenatally, during birth, or shortly after birth. As birthing methods improve and become safer, the prevalence of cerebral palsy decreases (Prevalence of Cerebral Palsy, 2014).
However, in Lusaka, Zambia, birthing methods are often far from safe. As we rode in a taxi for the final time on our way to the airport, we listened to a news story on the radio that discussed some of the challenges of giving birth in Lusaka. There is one major hospital that boasts the best birthing facilities in the area – UTH. It has become a status symbol to deliver a child at UTH, which is encouraging because more women are becoming conscious of the need for proper birthing methods and want to give birth in a safe location. However, UTH consistently runs out of beds in obstetrical wards. There is simply not enough space or doctors to serve the increased demand for the hospital’s birthing facilities. As a result, officials have asked that new mothers give birth at local clinics, reserving beds at UTH for difficult births and neonatal complications.
Many Lusaka residents called into the radio station in response to the story to share their thoughts and experiences. Few were positive. One man, whose wife had given birth three months prior, said that there was not even enough room in their local clinic for his wife to even lay down while in labor and delivery. Everywhere, people had been underserved due to lack of space and other resources. If both the hospitals and clinics are overfull, where should they turn?
While many health issues surround inadequate birthing facilities, one that particularly pertains to Special Hope Network and our work with the organization is the increased risk of disability in the neonate. For example, in the developing world, cerebral palsy is often the result of poor birthing methods (Arens, 2008)). But, in truth, the brain damage that results in cerebral palsy is only the first part of the problem for these children. Their parents and other family members often don’t know how to help them. The more developmental milestones they miss, the less their family feels it can do. In the compounds, children with cerebral palsy are left to lay in bed all day long, and, if they need to be moved, they are tied over their mother’s, grandmother’s, or sibling’s back with a chitenge. Rarely, if ever, are they encouraged to strengthen their weak, rebellious muscles. They become malnourished and their muscles waste away or are so contracted that their joints become contorted and immobile. The sad truth is that it is likely that some, if not many, of these children were not born with intellectual disabilities. However, due to lack of stimulation and engagement, they fall far behind their peers intellectually.
Our faculty advisor, Paige Pullen, a professor in the Curry School’s Special Education department, pointed out that it was the children with cerebral palsy that often had the greatest potential for improvements. However, this all depends on early intervention (Special Needs Hope, 2006). Through the implementation of motor exercises and stretching, more control can be gained over muscles. Mobility can be achieved through wheelchairs or other adapted equipment. Education can be accessible with patience, adaptations to curriculum, and augmented communication devices. But this isn’t happening in Lusaka, particularly not in the compounds in which Special Hope Network’s Community Care Centers operate. Yet, it would be unfair to blame the families, for few are educated about their child’s disability before they come to Special Hope. Nor can we blame the schools, there simply aren’t resources to allow them to accommodate for these children. When general education is so limited across the country, we cannot reasonably expect an infrastructure for special education and adaptive teaching methods.
As a group, we felt especially overwhelmed by the children with cerebral palsy at the centers, some of whom were as old as 15 and 16 years but could do nothing independently. Some lacked even a spark in their eyes or a smile in response to someone saying hello. We didn’t know where one would begin to help these children. It was heartbreaking. As can be seen in the pictures, some families have been able to access wheelchairs with the help of Special Hope and other NGOs. Some still use chitenges wrapped over their back, even as the child grows into a teen and a young adult.
How can we begin to surmount such a daunting challenge? The weight of the problem feels enormous. As fellow humans, we have much more than improper birthing methods to consider. We must teach both men and women about prenatal care, about what constitutes a safe birth, about neonatal care, and about care and resources for people with disabilities. As we spent more time with Special Hope Network, it became clear that there is a great need for service in these areas. Some disabilities can’t be avoided, like Down syndrome and other genetic disorders, and autism. However, by instituting health care facilities that focus on prenatal health, safe births, and neonatal care, perhaps we could stem the number of children born with preventable disabilities, thereby improving the quality of life and potential for success for those children and their caretakers.
Arens, L.J., Molteno, C. D. (2008) ‘A comparative study of postnatally-acquired cerebral palsy in Cape Town.’ Developmental Medicine and Child Neurology
Prevalence of Cerebral Palsy. My Child, the Ultimate Resource for Everything Cerebral Palsy (2014). http://cerebralpalsy.org/about-cerebral-palsy/prevalence-and-incidence/
Special Needs Hope (2006). Child Cerebral Palsy Early Intervention Is Critical. http://www.special-needs-hope.com/cerebral-palsy-early-intervention.html