World Cerebral Palsy Day | Taking action to include children with cerebral palsy

Cerebral palsy is the most common motor disorder encountered by rehabilitation teams in the countries where Humanity & Inclusion works. Assisting children with cerebral palsy is therefore a major priority for the organization.

Seventeen million people worldwide live with cerebral palsy. It is the most common cause of motor disorder in children. Globally, people with cerebral palsy are still subject to discrimination.

Cerebral palsy is a group of lifelong conditions that affect movement and coordination. It's caused by a problem with the brain that develops before, during or soon after birth. It is sometimes associated with severe cognitive and sensory difficulties. It can also make it challenging to communicate with a child, to calm them and take care of them, which sometimes leads to rejection.

However, depending on the severity, if cerebral palsy is detected early, the parents are provided with information and the child receives immediate rehabilitation care, the likelihood of further complications can be reduced. The correct treatment can quickly transform the life of both the child and their family, and increase their chances of being able to walk, go to school, work and live a fulfilling life. 

Humanity & Inclusion takes an intersectional approach to healthcare and physical and functional rehabilitation, while working as closely as possible with the family in order to provide them with the best possible care and treatment.

First step: early detection

Children born with cerebral palsy in the low- and middle-income countries where Humanity & inclusion works are often at-risk of discrimination and exclusion.

“Cerebral palsy is caused by an accident during pregnancy or during or just after birth. Symptoms depend on which part of the brain is affected, and they change over time. If a baby does not receive treatment, they will develop problems with muscle tone and will not be able to coordinate their movements. The faster it is correctly treated, the less brain damage the child will experience,” explains Uta Prehl, Humanity & Inclusion’s West Africa rehabilitation specialist.

“Unfortunately, in the countries where we work, care staff are often not trained to detect this condition early on,” Prehl continues. “Midwives need to know how to test the reflexes of newborns, for example. These tests need to be done every three months to check if the child is affected. This is why Humanity & Inclusion trains medical staff in the early detection of the cerebral palsy whenever possible. Care staff need to make a diagnosis and parents should be provided with information and guidance on visiting a health center with their baby without delay.”

Raising awareness of parents

Many families never visit a health or rehabilitation center or go when it’s too late. Sometimes parents are unable to take leave from work or to pay for transportation to health centers. Others feel ashamed and frightened their children will be seen as different. In some countries, children with cerebral palsy are hidden away or ostracized.

Humanity & Inclusion runs family education activities to raise the awareness of parents and their communities to help people learn more about cerebral palsy and the possibilities that treatment can open up for a young child. Parents also learn about the significant role they play in helping their child at health centers and in their future care.

Rehabilitation is essential

Most of a child’s early learning and brain development happens before the age of 5. Early detection of cerebral palsy is essential to providing an immediate rehabilitation response, in addition to mobility aids and other supports. These are included in the services provided to children with cerebral palsy by Humanity & Inclusion’s rehabilitation teams or its partners. Mobility aids and other supports must be personalized, and children need to learn how to use them with help from their parents.

“With our partners, we work in direct and close contact with families, often the mothers, to ensure rehabilitation care produces the right results,” Prehl explains. “We need to provide equipment or devices adapted to the child, like mobility aids, and adapted chairs and tables, which are made to measure to give the child proper posture support. 

“We make the diagnosis and decide on treatment and orthopedic fitting using the international Global Motor Function Classification Scale, which means we can work in a way adapted to each child, based on a precise evaluation. The next step—exercises to learn how to use posture and mobility aids—depends a lot on the relationship between the mother and child, and how motivated they are.”

Many people with cerebral palsy live long and fulfilling lives with support from Humanity & Inclusion and other organizations around the world. But too many people are still left behind. Humanity & Inclusion will continue its efforts to ensure young children with cerebral palsy are able to access the immediate care they need and to increase their chances of enjoying the same rights and opportunities as everyone else.