The Reality of Cerebral Palsy in Zambia

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.

 

Two of the children with Cerebral Palsy in the Garden compound.

Two of the children with Cerebral Palsy in the Garden compound.

6A15ED1F-1E2F-4B72-B59A-C7606A3DAC9A

This picture was taken at Special Hope’s Resource Center and it demonstrates the adapted chairs that many children with Cerebral Palsy spend their day in while doing work at the center.

EAD47204-90EC-4722-9838-337722B1FEB5

Emily and Lauren working on stretches with the children and their moms at the Garden compound.

EC280B15-DE4E-4DD7-AFDD-357B3BBF2D51

Lauren working one-on-one with a child to stretch out his tight muscles at the Garden compound.

F5C206BF-EE32-49FB-BD99-CE910807BE40

This picture shows Paxton helping his friend get situated in his wheelchair before leaving.

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

Advertisements
Standard

Ku-punzitsa Apunzitsi Update

Hi guys! So this blog post was originally composed during our trip while we were in Cape Town for meetings but we were unable to upload it at the time due to connection difficulties. Sorry for the delay but here it is!

My name is Amanda Halacy, I am a rising second year, and my teammates are Lauren Baetsen and Emily Nemec, both rising fourth year Biomedical Engineering students. This summer, we’ve been working with Special Hope Network (SHN), an NGO based in Lusaka, Zambia that provides education to children with intellectual disabilities. Our main project has been to collaborate with SHN to improve teachers’ skills in planning fine motor, gross motor, literacy and math lessons.

All of the teachers employed with SHN are all high school Zambian graduates. They are very eager to learn because they see the children progressing much faster as a result of their new lesson planning training. Developing the teachers’ executive function skills (lesson planning, task management, goal setting, etc.), plays a vital role in the children’s literacy, life skills, and social skills. All three areas directly correlate with physical health, opportunity for upward mobility, and quality of life. Thus far through our meetings, the teachers have been extremely attentive and involved. We have learned so much by working with them and we look forward to continuing that work, focusing especially on scope and sequences for the kids, when we return to Lusaka.

The largest challenge that we have faced thus far is encouraging the teachers to be creative and flexible when it comes to planning their lessons. When given a lesson plan, a teacher should be able to adjust the activity and difficulty based on a child’s individual goals and needs (IEPs). However, failure isn’t seen as a stepping stone to success in Zambia as it is in the US. It’s difficult to work with the teachers on lesson planning trial and error because they feel like every lesson plan needs to be an immediate success when in reality, it’s often better to fail and learn from the mistakes for next time.

We are in Cape Town this weekend having just met with Carole from Nal’ibali. Nal’ibali is a “reading club” program in libraries, schools, and community centers in six provinces in South Africa. Their goal is to encourage literacy through storytelling and reading for pleasure. They train local volunteers, often teachers, librarians, or parents, in shared story book reading techniques. Our team was very impressed by Nal’ibali’s network and motivational practices in place. They have created a strong communication network by encouraging volunteers to use a Facebook group, WhatsApp, and more to check in and ask each other questions. We had a great conversation about Nal’ibali’s training and are excited to take ideas back to Lusaka!

teacher shot

Seen above are some of the teachers that we worked with, this was taken at our very last teacher meeting after completing our finalized Animal Unit.

Pictured is our full group taken on the porch of SHN's Resource Center.

Pictured is our full group taken on the porch of SHN’s Resource Center. From left to right: Emily Nemec, Lauren Baetsen, Professor Paige Pullen, Amanda Halacy and Joann Judge. 

nalibali shot

This picture was taken in Cape Town after one of our meetings with Nal’ibali.

Standard

Adventures in Cambodia

Stepping off the plane onto the tarmac, the first thing we noticed was the heat. The road itself seemed to shimmer from the glancing rays of the sun, as we sped along in a tuk-tuk, the local mode of transportation.

10462674_689638511106526_8059663165089417404_n

The second thing that we noticed was the genuine hospitality that embraced us during the entirety of our trip. Every person that we met was kind, friendly, and welcoming. We were greeted at the airport by the staff members and children of Build Your Future Today Center, our partner organization. Our next step was SamSo Guesthouse, the hotel that was our home for the five weeks we were in Cambodia.

10403914_620555854706549_5475071421479120889_o 10455339_689638594439851_7183147830867671417_n

From there, we visited the BFT Center located in Siem Reap, Cambodia to attend the Children’s Day event they had planned. All of the students performed with their respective classes, from dances and songs to speeches about the significance of Children’s Day.

10298617_10204101733449293_4167450588818863527_o

From then, we fell into a routine that was somehow completely unpredictable. We did not have a predetermined schedule; every week would involve something different. UVA GlobeMed helps BFT by funding the projects of two specific villages: Arak Svay and Sre Robong. We visited these two villages and got to see firsthand the progress that had been throughout the years of our partnership.

Arak Svay is a self-sufficient village in which the members take care of one another. They villagers also cook their own food. Some of the women weave baskets or make bracelets for sale in the city.

During our stay, we also took BMI measurements of the children in Sre Rebong, as well as helped build a house in Arak Svay along with the monks of the area.

10446154_634850403277094_5828858125675748639_o

During the evenings, we taught English at BFT. The lessons largely consisted of grammar and we found that the students were all very eager to learn. BFT has a very clear vision for the future, and from what we saw, it is evident that funds are being used efficiently and effectively. The biggest difficulty we encountered during our stay was the language barrier. Though the BFT staff spoke good English, it was more difficult to communicate with the villagers. Furthermore, despite all that BFT is doing, there is still much poverty in the villages. Some of the more rural villages do not always have access to clean water and the schools have only a handful of classroom supplies. However, we are confident that together with BFT, GlobeMed will continue to have a positive impact on these villagers and diminish the difficulties in their lives.

Standard