What is this disease? What causes it? Is it curable? And many other questions race through our minds every time we see a child with one or more malfunctioning limbs.
There is a strange mystery that surrounds the condition medical experts call cerebral palsy. In a bid to explain the condition people have ignorantly branded it the curse, the omen and some even view it as punishment for sins.
Cynthia Nyakio 10years knows this all too well. She has been a victim of all this and now neighbours and relatives view her as the black sheep of the family.
“Life has been a nightmare for me ever since my daughter developed this condition back in 2005,” said Jane Muringo.
With tears in her eyes the mother of two explained that relatives and friends started avoiding her claiming that she was cursed. Her family turned into a subject of ridicule.
The only consolation left was her husband and after three years they bore a second daughter. The husband had however drawn more and more into drunkardness and was not assisting in any way.
He soon grew tired of the scorn and abandoned them making life even harder for Muringo and her children.
“Being the father and mother of my children especially Nyakio has made it very difficult for me to find a job to sustain us,” she said “I am forced to lock her up in the house as I go to find odd jobs to try and make ends meet.”
Muringo’s ordeal is because no one is willing to take care of her child when she goes to work. Her bid to seek for assistance from government offices did not proof to be helpful.
The ministry of gender children and social development office in Kerugoya directed her to Joy town school in Thika but the journey to Thika too was futile.
She was sent back to the Kerugoya office and despite paying an interview fee of sh200 at Joy town, they told her that Nyakio was not viable as they do not deal with such cases.
Inspite of all these odds, Muringo has learnt to cope with the situation as she now fully understands the pressure of cerebral palsy. She is however a bitter mother as she believes that her child’s condition was a result of a doctor’s recklessness.
A one on one interaction with Dr. Ezron Macharia revealed that this is partly true as medical mistakes are one of the major causes of cerebral palsy. He added that cerebral palsy is a none progressive disease that affects the mortar system.
“It is like a life sentence as once a child develops the condition she has to live with it for the rest of her life as the condition is not curable but can only be managed through therapy,” said the doctor.
He said that one of the most common mistakes that can lead to the condition is giving a child the wrong medication.
Macharia explained that the liver of a child is young not fully developed and hence unable to detoxify some proteins that need to be excreted such as bilirubin.
Bilirubin then finds it’s way to the brain and gets deposited at the base causing a disease called kernicterus that precipitate cerebral palsy.
The doctor explained that other medical mistakes that can cause the condition also includes leaving the child in the birth canal for too long causing lack of oxygen and failure to recognize and treat seizures.
He went on that failure to diagnose and treat meningitis in time as well as failure to perform C-section in presence of fetal distress may also cause the condition.
Macharia cited that the excessive use of vacuum extraction and failure to detect prolapsed chord is a regular cause too.
Cerebral palsy manifests itself in various forms. The child may be seen to have muscle tightness, involuntary movement, disturbance in gait and mobility, impairment of sight, hearing or speech and seizures as well as sharp pitched cries.
According to Macharia, one can easily detect a child with cerebral palsy by observing that the child lacks concentration and looks disoriented from the environment. A child with the condition usually has very disrupted sleeping patterns too.
He insisted that the risk of getting children with cerebral palsy can be minimized by ensuring that both parents are not below 20years or above 40years.
“people of African-American ethnicity are more prone to get children who will develop the condition,” he said.
Some other risks related to the child are when one of a pair of twins dies or children born with low birth weight. The first child and the fifth onward are also at a higher risk than the rest. Premature infants of less than 37weeks are at a very high risk too.
Rest we get too scared, Macharia was quick to add that only less than 10 per cent of the population is affected by cerebral palsy. He said that it is also important to not implicate any gender as the ratio of boys to girls affected is equal.
He advised the public to accept those affected as part of them as this assists them in their therapy too.
“It is important to realize that it is not the fault of the affected that they are this way and neither is it a curse or a punishment for sins,” said Macharia. “Anyone can fall victim.”
Just like Muringo, people should get informed about the condition in order to be in a position to deal with affected people like her daughter.
“I only wish someone would look at our struggles and have mercy on us atleast help my child get to a school of children with special needs so that I can be in a position to fed for them,” says Muringo as her voice drains into sorrowful sighs and tears flow freely from her eyes.
Ends…
