Bringing help to children affected by cerebral palsy

October 6 is World Cerebral Palsy day and this year’s call is to become a catalyst for change to help improve the lives of those with cerebral palsy.

According to mayo Clinic, cerebral palsy (CP) is a group of disorders that affect movement and muscle tone or posture. It's caused by damage that occurs to the immature, developing brain, most often before birth. Children with cerebral palsy experience abnormal muscle tone, posture and movements.

Julius Oyeyo, the clinical director, at Tunaweza Children’s Centre says in Uganda, cerebral palsy affects 25 in 1,000 live births, making it the main cause of physical disability among children.

Signs and symptoms

Children with cerebral palsy may have other challenges associated with the condition such as:

●Learning disability

●Epileptic seizures

●Sensory deficits such as low vision

●Contracture and deformities such as high palate

●Speech, chewing and swallowing deficits

Tecla Chagweda, is a mother of a child with cerebral palsy and says raising a special needs child is a full time and challenging job. 

“The pain and trauma of your child not reaching milestones such as sitting, walking and talking is unbearable. It usually leads to depression and mental breakdowns. Additionally, these children suffer low muscle tone which makes feeding and swallowing difficult so there is the extra burden of feeding them through a tube,” she says.

Alfred Bwambale, another parent adds that these children drink less liquid than they should because of choking. 

“Owing to that, they get dehydrated leading to constipation,”  he says.

Because they do not eat that much, Bwambale says the calorie intake is also low , which predisposes them to malnutrition.

Chagweda adds that they also make regular visits to the hospital because of seizures and other related diseases. 

“These children need medication every day to deal with stiffness of muscles and to control the seizures,” she says.

As they grow, they need wheelchairs and other mobility devices which are expensive and sometimes unavailable. That is also because the wheelchairs are not ordinary as they must be tailored-made for each child.

With few people aware of the condition, most of these children alongside their parents face stigma. 

“The way people look at my child in those rare moments I take him outside often makes me cringe. On the other hand, many husbands have abandoned these children to their mothers. However, for such mothers, finding gainful employment is difficult because there is no one to look after the child,” Chagweda says. 

She adds that most people associate CP with witchcraft, and the child is considered a curse. Therefore, parents are sometimes forced to keep the children from the public eye.

Chagweda, out of her own pain and that of other parents started Weavana Africa Fortress of Hope. 

“It was born out of the need to bring together parents with children with cerebral palsy.  It is meant to help parents cope through interaction with other parents with the same problems as well as professional. Sharing is therapeutic to these parents,” she says.

Causes of cerebral palsy

There is no specific cause of CP, Oyeyo says there are influences that can increase the risk of a child developing cerebral palsy before, during and after birth

Before birth

●Viruses (Herpes, cytone Galo virus, Rubella)

●Infections (Toxoplasmosis)

●Drugs and alcohol

During birth

●Prematurity

●Severe jaundice

●Birth asphyxia (insufficient oxygen to the brain issues). Babies are supposed to cry at birth so that their airways are clear ready, to survive in the new environment, failure to do so may lead to asphyxia

●Birth injuries

After birth

●Infections such as cerebral malaria in Africa

●Trauma

●Sickle cell anaemia (ischemic stroke)

●Falls with head collision

Diagnosis and clinical signs

●Abnormal muscle tone (low, high, fluctuating)

●Involuntary movements

●Delayed motor milestones (head control, rolling, sitting, crawling, standing and walking)

●Abnormal or lack of reflexes such as suckling reflex, stepping reflex, protective reflex. In some children the reflexes may persist

●Non or under responsiveness to sensory stimulation 

Oyeyo says the confirmation of the brain regions affected is done through Magnetic Resonance imaging (MRI). “Paediatricians normally recommend this test once they suspect cerebral palsy based on the history and presentation of the child,” he says.

Management and early intervention for cerebral palsy

Cerebral palsy is associated with multiple challenges, therefore, its management requires a team of healthcare professions working together with the parents/caregivers/family of the victim. 

Speech and language intervention 

The speech and language therapist assesses and makes a treatment plan for improvement of speech, language acquisition, safe and more effective swallowing as well as how to maximize their communication. Elizabeth Okwir, a speech therapist says some of the intervention plans include; 

Engaging child in orofacial exercises of the articulators to improve speech production, voice and movement of facial muscles. That improves orofacial function as well as saliva/drooling management.

Improving respiratory support by investigating breath support strategies which enable the child have improved breathing and voice tone. 

“We also work on the positioning and handling of the child. The child also goes through Augmentative Alternative Communication (AAC) methods to boost forms of expression through gestures, sign or communication boards,” Okwir says.

The therapist also works with the family advising them on the ideal food consistency to avoid health issues as well as teach them effective communication techniques. 

Physiotherapy

The child has several disabilities, therefore, the physiotherapist thoroughly examines them to find out the real limitations because each child has different challenges. Thereafter, the therapist designs an exercise programme to help the body relax yet stretch. 

“That helps the child learn how to make various movements and hit milestones such as crawling, standing and walking with support,” Emmanuel Yiga, a physiotherapist says.

Occupational therapy

Each child’s occupational therapy treatment is highly individualised, tailored to their individual physical, intellectual and socio-emotional abilities. Focussed on fine motor, perceptual and oral-motor development, and observing how the child responds to touch and movements, occupational therapy uses functional activities.

 “These progressively help the child improve functional performance. There are several activities involved, such as visual motor skills to improve their sight as well as self-care to help the child learn how to take care of themselves,” Oyeyo, who is also an occupational therapist says. 

Other interventions include medication needed to manage the seizures and sometimes the muscle tone (muscle relaxants), orthopaedic technology to provide customised assistive devices to help with mobility such as tailor-made wheel chairs as well orthotic appliances. Oyeyo says parents and caregivers also need counselling to help them better help their children. 

Special needs teacher

Not everyone who suffers from cerebral palsy is particularly incapacitated by it as some can be supported and excel in learning. This depends on the severity of the condition. “Due to cognitive problems, children with CP must be helped through assessment to learn their weaknesses and strengths thus tailoring an efficient plan,” Rebeccah Nassuuna Mayanja, a special needs teacher says. 

The special needs teacher helps them by liaising with the other team members such as therapists, parents to design an individualised learning plan (IEP) to help the child learn according to their ability. Mayanja says this is consistently reviewed as a team.