Bilal has cerebral palsy. The exercises he does with the support of the occupational therapists of HI help him interacting with his brothers. (Archive photo) | © Benoit Almeras / HI
To mark World Cerebral Palsy Day on 6th October, Humanity & Inclusion highlights the importance of providing care and treatment to children born with this life-long condition.
Cerebral palsy is the most common motor disorder encountered by rehabilitation teams in the countries where Humanity & Inclusion (HI) works. Assisting children with cerebral palsy is therefore a major priority for HI.
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, putting many people in vulnerable positions.
Cerebral palsy is a group of lifelong conditions that affect movement and co-ordination. 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 impairments. It can also make it difficult 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 and if 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 can transform the life of both the child and the family and increase their chances of being able to walk, go to school, work and life a fulfilling life.
HI takes an intersectoral 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.
Children born with cerebral palsy in the low- and-middle-income countries where HI works are often extremely vulnerable.
“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 suffer,” explains Uta Prehl, HI’s West Africa rehabilitation specialist.
“Unfortunately, in the countries where we work, care staff are often not trained to detect this condition early on. 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 HI trains medical staff in the early detection of cerebral palsy whenever possible. Care staff need to make a diagnosis and parents should be provided with information and guidance on visiting a health centre with their baby without delay.”
Many families never visit a health or rehabilitation centre or attend too late. Sometimes parents are too poor to stop work or to pay for transport to health centres. Others feel ashamed and frightened their children will be seen as different. In some countries, children with cerebral palsy are hidden away or ostracised.
This is why HI runs family education activities to raise the awareness of parents, along with their communities, and to help people learn more about the condition 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 centres and in their future care.
Most of a child’s early learning and brain development happens before the age of five. Early detection of cerebral palsy is essential to providing an immediate rehabilitation response, in addition to mobility aids and other supports. They are included in the services provided to children with cerebral palsy by HI’s rehabilitation teams or its partners. They must be personalised, 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. 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 orthopaedic fitting using the international GMFCS1 classification system, 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, however, and how motivated they are,” adds Uta Prehl.
Many people with cerebral palsy live long and fulfilling lives thanks to the work done by HI and other organisations around the world. But too many people are still left behind. We must continue our efforts to ensure very young people are able to access the immediate care they need and to increase their chances of enjoying the same rights and opportunities as everyone else in society.
1 GMFCS: Global Motor Function Classification Scale