Brian Lubega has had to endure pain all his life. His mother abandoned him after birth, while his father succumbed to tetanus five months later.
The little one was left in the hands of his poor grandmother with whom he stays in Kangulumira sub-county, Kayunga district.
“I picked Lubega from Kanyanya in Kampala, where he was staying with my son. He was very ill and tiny. He was dirty, couldn’t eat and drink,” Lovinsa Mukisa, the grandmother, narrates.
“Without a mother at home, the neighbours told me his father [before he died] used to lock him in the house and come back at 10pm to feed him.”
Mukisa also tried to trace her daughter-in-law, in vain. Although she does all it takes to bring a smile on Lubega’s face, his condition is disturbing. At three and a half years now, Lubega looks like he is just months old. He hardly says a word. He neither sits nor walks.
For all the time I am there, he is wrapped in baby sheets that map out his thin frame. Only his head can be said to suit his age, but his hands and legs are very tiny – like a little baby’s. His navel is so big that whenever he cries, it swells like a balloon and his green veins are exposed through the skin. Lubega is in pain.
And when his grandmother is going to the garden some miles away from their home, she locks him inside the house until she returns.
According to Carolyne Maholo Sserunkuma, an assistant lecturer at Kyambogo University faculty of special needs and rehabilitation, Lubega has cerebral palsy (CP), also known as brain paralysis. When Maholo slightly tries to massage Lubega’s leg, Lubega stops crying and visibly calms down.
“If you hold such babies roughly, their bodies respond and they resist. They only open up when you help them relax and be able to stretch in the best way they can,” says Maholo.
She adds that CP is common in children and usually manifests as a result of a combination of events either before, during or after birth that lead to injury in the development of a baby’s brain. Also, when an expectant mother has fever, frequent malaria, malnutrition, among other challenges, she has higher chances of delivering a child with cerebral palsy.
“If a child has very high temperatures which are not managed coupled with malaria and dehydration, they are likely to develop CP,” Maholo adds.
For Lubega, she says, he is well-fed but has been locked in the house for too long and this also caused a vitamin deficiency. Maholo urged his grandmother to carry him outside in order to experience the cool weather and mild sunshine, to keep his skin and body ger, in addition to simple physiotherapy sessions.
These include putting water in a big basin and the child tries to kick around, or make a ball for the child to have fun with while exercising his muscles.
How to manage cerebral palsy:
The fact that there is no cure for CP does not mean the diagnosis is a death sentence. Persons with cerebral palsy have impairment, but are considered healthy, although parents link this condition to witchcraft, according to Maholo. She urges mothers to prevent high fevers in their children and consistent vomiting to avoid losing too much body fluids.
“If a mother can’t go to a hospital immediately, they should use a piece of cloth with water to cool the body so that the temperatures don’t escalate,” Maholo says. Many children with CP die due to poor management and malnutrition.
According to Maholo, Uganda currently has no statistics for children living with or dying of cerebral palsy, but said there was a possibility of growing numbers. Such children, according to Maholo, should not be forced to sit because the condition does not allow them to develop like other normal persons.
She says their bodies cooperate better when they have a rounded back, something that can be achieved when the child is placed in a corner of a brick house.
“Their shoulders will push forward slightly and they will be able to swallow better and feel like any other child,” Maholo says. “Here, they will live as long as you can help them.”
The children should also be taught how to grip (occupational physiotherapy) using body parts. She says one can start with something big like a bottle and holding a hand. But as one continues to narrow the object, the child usually develops the potential.
However, if they are not helped, they develop contracturesmuscle stiffening which makes intervention very difficult.
“Even when you want them to use a wheelchair or a tri-cycle, they can’t because they will need their hands for support,” Maholo adds.
Source : The Observer