The Rehabilitation Unit for Special Children

Cerebral Palsy (CP) in Uganda: Cerebral palsy is the most common motor disability in childhood and the most common movement disorder in the world. 

The incidence of cerebral palsy is approximately 150-250 per 100,000 live births worldwide. The rate of CP is believed to be significantly higher in less developed countries with a lower standard of medical care. 

CP prevalence is higher in rural Uganda than in urban centres, and children younger than 8 years are more likely to have severe cerebral palsy than older children. There are approximately five times more children with post-neonatal cerebral palsy in Uganda than in high income countries, suggesting that cerebral malaria and seizures are prevalent risk factors in this population. 

Malnutrition and CP

In Uganda, children with CP are at a greater risk of malnutrition. This is because their neurological condition may affect the muscles and movements involved in chewing, swallowing, and eating. These children may also have gastrointestinal complications that affect what they can eat and how they absorb nutrients. Malnutrition is more common in children with cerebral palsy under 5 years of age. In children with CP, malnutrition has been shown to increase the severity of gastroesophageal reflux. Equally, nutritional rehabilitation has been shown to lessen the symptoms associated with gastroesophageal reflux.

The motor disorders of CP are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour; by epilepsy; and by secondary musculoskeletal problems. Although the primary problems associated with CP are neurodevelopment in nature, challenges with growth and nutrition are also common in affected children. Children with CP are smaller and more poorly nourished than their typically developing peers, these differences being more marked with increasing age and with the severity of the motor impairment. Good nutrition is the cornerstone of health and well-being for all children, whether affected by CP or not. With malnutrition, any child is more susceptible to diseases and death. 

Children with cerebral palsy presenting at the Wellspring physiotherapy department

At the Wellspring physiotherapy department 60% of the children presented suffer from cerebral palsy. However, it is estimated that hundreds of children in the greater Masaka district suffer from CP. Many of these children are never seen due to their extreme poverty and social exclusion. Such families cannot afford to travel regularly to Wellspring where their children can receive the help they need. 

This very great problem leads to the following questions:

• Who can assess a CP child’s nutrition status while at home? 
• How can such a child’s pain be managed in these rural settings? 
• How can the expected contractures in such children be prevented? 

All of these questions need to be addressed if we are to put a stop to premature deaths in children with CP. 

Many premature deaths in CP could be prevented by:

• Early diagnosis
• Management of any other illness/condition in a CP Child
• Ensuring sufficient and good feeding
• Regular Physiotherapy
• Pain relief
• Education in the communities of the needs and special nature of children with CP, so eradicating prejudice and exclusion

The proposed Rehabilitation Unit for Special Children

Main Objective:

To improve the well-being and nutritional status of children with CP in the greater Masaka districts through nutrition and physical rehabilitation, community sensitization and stigma eradication and encouraging families to at least have an income generating project to eradicate poverty.

Further Objectives:

• To ensure early screening and management of malnutrition in CP children
• To reduce/minimize pain among the CP children
• To control contractures among the CP children
• To educate families with CP children on how to care for a CP child
• To liaise with specialized hospitals for any additional surgical and medical treatment which may be needed
• To promote inclusive living in the entire community

A large, very generous legacy donation has been given to Medcare to enable the build and development of this Unit. The West Buganda Diocese have kindly offered land alongside the Wellspring Children’s Medical Centre for this development. Once secure and good governance is assured in Uganda this development will begin. Architectural drawings are being drawn up by Roman Strzala in Manchester and, once these are agreed upon, Ugandan builders will be asked to submit their tenders for the build. 

This is yet another exciting project which will further enhance our care of disabled children in the greater Masaka district of Uganda. 

Our thanks go to William, Ibrahim and Pascal for their inspirational proposals. 2023 is indeed an exciting year for Medcare and Wellspring!