It is a warm and humid afternoon here. In a single room, dilapidated mud walled structure within the underbelly of the sleepy and far-flung Kinamba village, in Naivasha Sub-County, it is impossible to ignore the anguish written over the face of the 25-year-old Margaret Wanjiru.
Just like every mother, one of Wanjiru’s childhood ambitions was to have healthy children and raise them to become strong adults who are ready to face the world.
Life, however, did not work out that way as two of her children, both boys (Ian Njoroge aged 7 and Stanley Kimani 2 years -not their real names) respectively were born with cerebral palsy, and she did not realize it immediately.
It only served to make the situation worse when Wanjiru’s husband of 9 years condemned her to a life of gloom once he abandoned her after 7 years of struggling to raise the two children with cerebral palsy.
“My husband used to do menial jobs at flower farms within South Lake Naivasha. I was a fruits and vegetable vendor. Our earnings were channeled into basic needs and our sons’ medical care. We lived in a double roomed house, but notwithstanding the challenges, we were a somewhat a contented family,” Wanjiru says.
Wanjiru recollects how the situation deteriorated one Sunday afternoon in November 2020 when her husband arrived home packed his personal effects and left in a huff declaring that he was going to open a new chapter in his life.
“My pleas for him to change his mind about leaving us fell on deaf ears. He did not give a reason as to why he was going away, but I later learnt that he felt I was a bad omen and he was under pressure from his relatives to abandon me,” recalls the mother of three sons and one daughter.
Wanjiru is now a mobile hawker of fruits to homesteads, at trading centres and construction sites. According to her, It’s not a well-paying job. She laments that as if rubbing salt in the wounds, her estranged husband has in the recent past been threatening, her demanding that she surrenders to him all household goods and furniture or face disclosed consequences.
It has not helped matters that Wanjiru has had to carry her physically disabled two-year-old son and his twin sister on her back whenever they leave home. There are days when she carries them for several kilometres while on errands in Naivasha because she can barely afford private means of transport.
Wanjiru gives a vivid account on how, when the first child was born 7 years ago, she and her husband were over the moon.
They named the bouncing baby boy Ian Njoroge (not his real name), and he was just like any other toddler for the first few months of his life. He suckled and slept like all babies do but at six months, his parents noticed something was not right.
“We noticed that he could not even turn his neck when he slept like babies of his age do,” says Wanjiru. “He was supposed to be learning to sit at this age but that was not happening,” she adds.
At the age of 2 years, he could not speak either despite tests at the Nakuru Teaching and Referral Hospital showing he was okay. The doctors recommended that she looks for a speech therapist to help him.
“Apart from not talking, we noticed his right side was weak. We started again in 2017 with physiotherapy, he went for physiotherapy for at least three years and still there was no progress,” she says.
“The fourth year is when we started seeing his limbs getting a little bit stronger, but his drooling couldn’t stop,” she adds.
Misfortune seemed to dog her steps when Wanjiru was blessed with her second son in May 2020. She noticed something was wrong with him, when he was six months old.
Just like his elder brother, he too could not walk or sit and her mother thought he was developing rickets.
“My husband and I first took him for a diagnosis when he was 10 months old but we still thought he had rickets so we did not leave the hospital knowing what his problem was, even though we were advised to take him for therapy sessions,” she says.
A friend who also has a child with cerebral palsy recognized what their son was suffering from and advised the couple to take the boy to a rehabilitation centre.
“The boys were making gradual improvements until their father decided to abandon us. Things are getting from bad to worse as rent arrears are piling,” she notes.
Ms Divia Shah, the chair of Divshah Foundation that supports children with cerebral palsy, urges donors to come on board and help Ms Wanjiru and other parents who cannot pay for the basic care for children living with the condition. She highlights numerous cases of parents who cannot afford the Sh1, 000 needed for physiotherapy and speech therapy sessions.
Having worked with cerebral palsy patients for over a decade, Shah points out that there are many myths surrounding the condition and even though it is common, it is not well understood.
“Some people believe that a child (born) with cerebral palsy has been bewitched. This belief makes some parents take time to accept the condition and they take longer to seek help,” Shah says.
The foundation has donated wheelchairs and organized physiotherapy sessions for children living with the condition in Nakuru County.
Shah adds, “Wanjiru’s case is not an isolated incident. When we sit in group therapy meetings, men are rarely there. It is sad to hear mothers talk of how their children’s fathers ran away as soon as they got news about the child’s needs.”
A 2016 study by the Orion Foundation indicates that 91 per cent of caregivers for people living with the condition in Kenya are mothers, and most have to quit their jobs in order to provide that care. 44 per cent of marriages are negatively affected if their child is diagnosed with cerebral palsy and in seven per cent of those cases, the father walks out.
Shah explains that before a child with cerebral palsy starts therapy, he or she has to be assessed to determine what kind of cerebral palsy he/she is suffering from and the best therapy that can be conducted.
She says cerebral palsy is a neurological condition and therapists will often do a neurological assessment to check the child’s reflexes, muscle tone and strength. “If a child does not seek help and therapies are not done to help with movement, a child may develop disability,” she adds.
Most of them require assistance even to relieve themselves, walk or feed. The symptoms are not visible at birth but they start showing at three to five years,” Shah says.
According to Sally Wambui Gichia, a child rights activist, it has not been an easy journey for Wanjiru and others in a similar predicament, as people stare and others make inappropriate comments.
When a child is born with special needs, in most cases, the father would abandon the family, blaming the woman for having a deformed bloodline. This is the state of affairs we want to end,” notes Gichia.
She says while some have to live with the disabilities for the rest of their lives, others make gradual but full recovery after regular therapy and medications.
According to experts, cerebral palsy is a type of brain damage that occurs before a child reaches the age of five, during pregnancy, at birth and after birth. The damage may be caused by infections, such as meningitis or encephalitis, inadequate blood flow to the brain, blood clotting problems, a heart condition that was present at delivery, abnormal blood vessels or sickle cell disease.
Depending on the severity of the condition, a person living with cerebral palsy can live up to between 30-70 years. The more severe the condition, the more prone the child is to premature death.
Experts say that as of now there’s no cure but a person living with cerebral palsy can have impairment but are considered healthy.
Failure of a baby to cry immediately after birth, they explain can cause cerebral palsy as crying is critical for it opens up the lungs and enables it to breathe.
The Centre for Disease Control estimates that 3 in 100 children in Kenya live with cerebral palsy. Globally, people having cerebral palsy are estimated to be 17 million.
According to the World Health Organization (WHO), cerebral palsy presents itself in four forms: spastic where the muscles are tight, floppy where the body of a child may appear wobbly, athetoid where a child’s movements are jerky and there is a fluctuation of muscle tone and the final one is a child with a combination of two forms.
By Anne Mwale and Dennis Rasto