The mission of CURE Children’s Hospitals is to heal the sick and proclaim the kingdom of God. With this mission, we regularly serve children with disabilities that have negatively affected their lives. Many of these children have lost hope for ever finding treatment and often feel useless and depressed. When they walk through our doors, we create a treatment plan for their physical conditions and also spend hours with them sharing God’s word. Our goal is to have them leave the hospital healed and hopeful for the future because they encountered the truth of being created in the image of God. However, some conditions do not immediately improve and require a much longer commitment to rehabilitation. Cerebral palsy is one of those challenging conditions.
Most of the people we serve do not understand what cerebral palsy is and their request for our doctors is, “My child hasn’t been able to sit, stand or talk. Please help us so that he can do these things.” The biggest task for the doctor at this point is to explain the condition and what can be done to improve the child’s life. They suggest physiotherapy and ask the guardians to continue without stopping so that the changes can be felt. This is a process that takes an excruciatingly long time, and it is common for patients to fall back on their physiotherapy and stop coming to clinics because they don’t see the change they want soon enough.
Cerebral palsy (CP) is caused by several things but the most common is insufficient oxygen in the brain during delivery. When there is insufficient oxygen in the brain, the cells responsible for some of the most important things like mobility are damaged. Now, all this is very difficult to understand for a mother who comes from the village with little education. In most cases, people from the villages believe the condition is the result of witchcraft or a curse.
There are many challenges faced by both the children who are born with CP and their guardians who stay by their side. Some of these challenges include hygiene, feeding, mobility, rehabilitation, a balance between work and the children, and financial challenges. Some of the observations we have made from our vast mobile clinics and home visits are that most parents have a really tough decision to make when it comes to work and their child. If the parents choose to work, then they have to decide whether to hire someone to stay with their children or bring in a family member to do that.
CURE’s role in treating CP patients is to help caregivers improve the quality of life for their children. Our chaplains help to demystify any misconceptions through counseling and encouragement. This is very important because a huge percentage of parents that we see in Kenya have the idea that CP is more spiritual than it is medical. The condition is a medical one and often requires physiotherapy services. These services can improve movement, posture, and balance for a child with CP. When physiotherapy is done well, children with CP can gain more independence with their day-to-day activities. However, some children with CP present with problems that require surgery as a solution. It is common for a child with CP to have a dislocated hip which is put back in place through surgery.
These solutions are just the tip of the iceberg, and there is much more that can be done to help these children and their caregivers. Mary Goretti, a physiotherapist at CURE Children’s Hospital of Kenya, said, “My goal with CP is to help parents understand the condition. Patient education is important because they can better help their children.” CURE serves many patients who are less fortunate and often ignored members of society. To reach these people, we require teams that understand CP and that will show compassion and love to those dealing with this condition. As Mary suggested, community-based rehabilitation is a very good way to start. Parents are encouraged to create social groups of caregivers of children with CP where they can share their experiences and encourage each other.
Through partnerships with organizations like Living With Hope, CURE can provide mobility devices like wheelchairs, walkers, and crutches to children with CP. Mobility being one of the major challenges for these children, these devices come in very handy in their daily lives. The children and parents we serve carry the extra burden of stigma, but we choose to go the extra mile and show these families compassion and love.