Dina* (not her real name) had a hard time delivering her first child, Don* (not his real name) because he was a large baby. She recalls how he came into the world blue and unresponsive.
After the doctors revived him, he was later put into an incubator for a week, where he experienced frequent fits. After his condition stabilized, they brought him home, but they realized he wasn’t normal when Don was seven months old and still couldn’t roll over.
“He just tucked his arms towards his body and his whole upper body was stiff. Later on, he started having fits again, and we did a CT scan which showed that he had ‘generalized’ damage to the brain. Only then we were told of this condition called ‘cerebral palsy’ and its effects,” she recalls.
It was a start of a new journey for Dina and her husband as they had to re-organize their entire lives to fit Don’s various disabilities.
“He needed regular medications and physiotherapy. We also had to learn how to handle his fits, frustrated tantrums and help him to sleep at night. It was exhausting, but we are fortunate to have the support of our family members to help care for him,” she says.
What hurt her most was how society reacted to Don.
“Once we took him to a close friend’s house for a birthday party. The host very kindly provided a corner for him to lie down but everyone looked at him as if he was some kind of display. It was very uncomfortable trying to ignore their whispers and listening to their unsolicited advice.”
Their response is mainly due to a lack of understanding on what is Cerebral Palsy. Here are some facts:
WHAT IS CEREBRAL PALSY (CP)?
‘Cerebral’ means brain and ‘palsy’ is a disorder of movement or posture. Cerebral palsy is a term used to describe a group of chronic conditions affecting body movements and muscle coordination.
The condition may range from mild to moderate to severe. People with mild CP may be clumsy, while those with moderate CP may walk with a limp or need a brace or cane to walk. Severe CP affects all parts of a child’s development, including physical movements and learning abilities.
WHAT CAUSES CP?
CP is caused by damage to the child’s brain during pregnancy, the birth process or during the newborn stage. Depending on the severity of the brain damage, the child may be a diplegia (only the legs are affected), hemiplegia (half of the body is affected) or quadriplegia (arms, legs, possibly torso and facial muscles are affected).
There are no definite answers but experts believe the brain damage is caused by multiple causes which include:
– extremely low birth weight and premature delivery
– infections during pregnancy such as rubella, diabetes, thyroid and high-blood pressure
– Asphyxia or insufficient oxygen to the brain during birth
– meningitis infection(bleeding into the brain)
– brain damage during delivery arising from complications such as Anoxia, (placenta around the baby’s neck) or baby in the birth canal for too long
WHAT ARE THE SYMPTOMS?
Diagnosis of Cerebral Palsy usually happens between 15 and 24 months, sometimes later because some symptoms may manifest late in childhood.
Although most Cerebral Palsy cases occur after birth, adults can also get CP through an accident resulting in brain damage.
Depending on the severity and which area of the brain is damaged, people who suffer from cerebral palsy may have one or more of these symptoms:
- Muscle tightness or spasm
- involuntary movement
- Disturbance in gait and mobility
- Abnormal sensation and perception
- Impairment of sight, hearing or speech
Generally, they are characterised by the inabilty to control their motor function, particularly muscle control and coordination and they may not be able to eat, walk, talk and play like other children.
Although it is not a disease that is curable, education, physiotherapy and applied technology can help people with cerebral palsy lead productive and independent lives.
Children with CP may need one or more of these therapies:
1) Physical therapy such as hydrotherapy and swimming to strengthen the muscles at the legs and trunk and help with balance
2) Occupational therapy such as getting dressed, feeding, writing and other fine motor skills
3) Speech and language therapy to help with speaking and swallowing due to problems with the muscles at the tongue and throat
4) Communication therapy such as using symbols, letters, pictures or words to communicate with people
5) Computer therapy such as games and programmes using customized keyboards or control switches
6) Medicine such as Botox injections help to relax the muscles and reduce the spasticity
Watch out for these red flags in your baby:
- Excessive lethargy or irritability
- High pitched cry
- Poor head control
- Weak sucking and tongue control
- Oral hypersensitivity
- Decreased interest in surroundings
- Stiff or floppy posture
- Abnormal or prolonged reflexes
SINK THOSE STEREOTYPES!
- People with CP are not retarded- some of them are known to have above average intelligence.
- Not everyone with CP has a learning disability- some are quite normal.
- Some people with CP are able to work and can become productive, committed staff if given the appropriate training.
- They can participate in sports like running, horseback riding and wheelchair sports.
- Their condition has medical and psychological basis and they are not possessed by evil spirits or cursed by their ancestors.
- CP is NOT heriditary -they can marry and have healthy children.
- CP is not contagious. People with CP can make good friends.
Spastic’s Children’s Association of Selangor and Federal Territory
The Kiwanis Disability Information and Support Centre
Tel: 03-7877 0096, Fax: 03-7877 8096
The Cerebral Palsy (Spastic) Children’s Association of Penang
Tel: +604-657 0160