To many people, cerebral palsy is ‘the other person’s disease! It rarely crosses many a mother-to-be that the baby they are carrying may end up a victim.
Purity Makori did not see it coming. Her pregnancy went without a hitch. But things were to go wrong at the end. ‘I had a prolonged labour. I laboured for almost 20 hours before the doctor decided I was to undergo a C-Section. Had he acted soon enough and made the decision earlier, the situation would have been different.’ Purity’s baby has cerebral palsy. Her son was deprived of oxygen during delivery. She has since filed a legal suit against the hospital in question and the doctor concerned. She awaits justice to take its cause.
Purity’s baby was born on the 27th of May 2007. Immediately, the doctors realized he was having seizures. ‘Usually, if a doctor sees a seizure he knows there is a problem. The hospital where my baby was born did not have paediatric equipment to take care of this situation. We had to transfer him to another hospital. He stayed in the high dependant unit(HDU) for close to three days before being transferred to the intensive care unit(ICU) for about 14 days. He was to be taken back to the HDU for seven more days before he got discharged.
On going home, he could not breastfeed hence we had to get a therapist to help out. We had to bottle feed him. I was stressed out and hence unable to suckle him. We took him to hospital for checkups to see the type of cerebral palsy he had and get advised on therapy sessions. He has spastic cerebral palsy and we had to find an occupational therapist (people trained in milestone development of children) to help us cope. I was informed about the Cerebral Palsy Society of Kenya (CPSK), a non profit making organization set up by parents of children with cerebral palsy.
At 15 months, my boy is improving. He is now able to turn his head, something he could not do initially. His muscles are starting to flex and he moves his limbs, albeit slowly. Therapy is improving his condition. He is not able to sit because sitting comes with neck control, which he does not have yet. He cannot roll on his own and neither has he uttered a word yet. We take him twice a week to the clinic.
What is Cerebral Palsy?
Cerebral palsy is a developmental disability caused by brain damage shortly before, during or after birth. The word ‘cerebral’ refers to the brain while ‘palsy’ describes lack of muscle control. This condition therefore describes brain damage which affects a person’s ability to move and control his or her muscles.
What causes cerebral palsy?
Failure of the brain to develop properly (developmental brain malformation), including neurological damage to the child’s developing brain as a result of injury before, during or after birth.
Circumstances that lead to brain injuries include:
O Lack of oxygen before, during or after birth.
O Bleeding in the brain.
O Toxic injuries or poisoning from alcohol or drugs used by the mother during pregnancy.
o Head trauma resulting from birth injury, a fall or car accident.
O Severe jaundice.
O Infections of the nervous system such as encephalitis or meningitis.
What are the symptoms?
Lack of alertness.
General irritability or fussiness.
Trembling of the arms and legs.
Abnormal, high pitched cry.
Apnea (altered breathing patterns or periods when the child stops breathing) common in prematurely born infants.
Bradycardia (very slow heart rate), common in prematurely born infants.
Poor feeding habits due to difficulty in sucking and swallowing.
Abnormal primitive reflexes (involuntary responses to certain kinds cf stimulation from the environment), such as an exaggerated startled response to loud music or sudden movement.
Low muscle tone.
Seizures (starting spells, eye fluttering, changes in consciousness, body twitching).
Is there any treatment?
Although there is no cure for cerebral palsy, much is available by way of treatment. The amount of help that can be given to a cerebral palsied child is varied and depends on many factors, including the type of cerebral palsy, the presence or absence of seizures, the level of intelligence and the kind of family environment. Early discovery and diagnosis of cerebral palsy is extremely important. Specific steps in treatment include:
O Use of braces and/ or crutches to improve balance, sitting and walking.
O Prevention of deformities or contractures (shortening) at the joints and corrective or orthopaedic surgery if needed.
O Use of protective helmets if the child falls frequently.
O Evaluation and optimum management of speech, sight and hearing difficulties.
O Specific training to assist with difficulties such as feeding, drooling and hyperactivity.
O Special education classes or programs for various kinds of handicaps,
O Control of seizures (if present) by medication, judicious use of all medicines.
Types of cerebral palsy
Spastic cerebral palsy
It makes the limbs stiff. The child is rigid and if therapy is not done they become more rigid. With therapy, they are able to flex their muscles, move their feet and hands. When the therapy is done early enough, these children will be able to do a few things on their own.
Athetoid cerebral patsy
The limbs are without any control. Floppy hands and limbs.
Ataxic cerebral palsy
It makes speech difficult. A child cannot communicate and if he does, he drools; words come out in a slur.
Mixed cerebral palsy
It contains elements of the other palsies. The most common form of cerebral palsy is spastic. In Kenya much research has not beer done on cerebral palsy to determine the statistics.
How long can one live with cerebral palsy?
This depends on the care given. The condition requires lots of money and in most cases you find that the most affected are from disadvantaged backgrounds. Therapy is expensive. Ignorance of the disease cannot be ruled out too. Those affected receiving little or no care. But there are children who have been able to come out of it. They go to normal schools, integrate well with others and perform functions on their own though not as well as the other children. With proper management they can have a normal life.
Is cerebral palsy inherited?
No. it is not inherited.
Parents need to be knowledgeable
It is important to know a baby’s development milestones. Knowing what a baby should be able to do by a certain age is very important. Like when a child starts to reach out (3-4 months), sitting (6-7 months) and walking at (10 months), so that if there is a delay, a visit to the doctor can be done.
Women, especially pregnant ones, need to be careful too when going to hospital. Choose your doctors and gynaecologists well. Do your research. Go for bone checkups during your prenatal visits whereby you are informed if you are suitable for a normal delivery or not.
What does CPSK do?
Its objectives are; To create awareness among parents and the public about cerebral palsy. To provide therapy as well as medical, educational and counseling services for individuals disabled by CP so that they may achieve their maximum potential.
To promote legislative policy and other measures to improve the welfare of CP sufferers in Kenya.
CPSK gives therapy sessions at very subsidized rates-Kshs. 200 a month for members. Therapy services at commercial rates range from Ksh.500 to Ksh.1000 a session.
Purity Maker is on advocate and Secretary of the Cerebral Palsy Society of Kenya.