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Elizabeth Wangari talks tenderly about her nine-year-old boy, she describes him as a cheerful child with an insatiable appetite for watching cartoons.

Jayden Mumo was born a healthy child before he began having bouts of health complications in the first month of birth.

A hospital diagnosis confirmed that he had meningitis. As time went by, the boy began to regress on some milestones he had already achieved, such as supporting his neck.

“We went to Kenyatta National Hospital and were admitted for almost one year. It was during this time that he was diagnosed with cerebral palsy (CP). He was diagnosed when he was around a year and a half,” recounts Wangari.

The diagnosis threw the mother of two into a whirlwind and set her on a path of utter uncertainty. She says the doctor delicately told her that her son would not be able to do some things and he would need round-the-clock care for the rest of his life.

“I was shocked when they said he had a disability. I had never heard or seen a child with cerebral palsy in my life,” said Wangari.

She narrates how rejection and stigma from her friends and relatives were rife following the diagnosis. Most assigned her blame for her child’s condition, including close relatives.

But this did not stain Wangari’s heart with dejection, she resolved to raise and care for her child spiritedly with the support of her husband who stood by her when everyone else faded away.

Social support group

In 2017 Wangari joined a support group after being introduced by a parent who was part of the group. She says the group gave her reprieve from the persistent onslaught of stigma.

The decision to join the group also freshly introduced her to cerebral palsy through the accounts and experiences of other caregivers.

“I was able to know the full diagnosis of my child, got my child registered to National Council for Persons With Disability (NCPWD), and began benefitting from the groups’ training,” said Wangari.

“We strengthen each other because we go through similar experiences. For instance, we teach new caregivers how to manage convulsions, which are frequent for a child with CP.”

Through the support group, the entrepreneur was fortified and equipped to give support to other parents and guardians caring for children with cerebral palsy and other forms of disabilities.

She was appointed Gikazi’s Special Mom self-help group’s champion parent and mentor and now traverses the country giving hope to caregivers and participating in various disability forums.

Responsible for stigma

“Sometimes as parents, we are responsible for fuelling stigma, because we hide ourselves, we hide our children. We do not talk about disability openly, thus the stereotypes,” Wangari explained.

The entrepreneur says that when forums, where issues of disability are convened parents with children with special needs hardly show up yet it is in these forums where decisions that affect them are discussed.

She says a lack of enthusiasm to attend such meetings marginalises key issues impacting children with disability and robs parents and caregivers of the chance to state their stake in vital policies and laws.

“I keep telling caregivers that they need to show up sometimes their views may not be heard sometimes we are called “special interest groups”, but it makes a difference when we show up,” she said emphatically.

She also faults the government for not, including persons with disabilities in decision tables ostensibly denying them the latitude to curate solutions for problems that affect them. “This is, especially the case at the community level where we are seeing people without disabilities spearheading decisions making entities. These people do not know where the shoe pinches and so cannot help us wholly,” said Wangari.

Wangari implores other caregivers not to be bogged down by negative labels and ill perceptions, but to plug into circles where they will be uplifted and strengthened to continue taking care of their children.

“I nearly committed suicide three times because of the so many issues, but here I am giving other people hope and telling them that it is not impossible to care for a special needs child,” she said.

Medical negligence

Veronica Kimondiu a casual labourer and mother of four children says her second-born child got CP as a result of medical negligence by the midwife tending to her. “The baby’s head banged on the table,” she said.

She also adds that the hospital she attended did not have an incubator, a circumstance she considers compromised her son’s health further.  “When I took the baby home he refused to feed and so I took her to a clinic nearby and they said the child was hungry and advised that I start her on cow’s milk. It worked, but soon after the child started vomiting and became generally unwell,” she explains.

Kimondio then took the child to a health facility where the health worker tersely told her ‘huyu ni CP’ and sent her away.

She says she left there inadequately aware of her child’s challenge and imagined her son’s situation would improve. She was also advised to give birth to another child, so that he/she would ‘help’ the other achieve his milestones fast.

Strengthen healthcare

Kimondiu asserts that had more care been taken at the health facility and services strengthened, her child and those of others with a similar condition could be avoided.

“We need to have facilities with functioning machines and baby units. Healthcare workers need to be more diligent in their work,” she says.

Cerebral palsy is a debilitating condition that affects infants as a result of inadequate brain oxygenation before and immediately after birth.

“The cause can be grouped as maternal, uteroplacental level, umbilical cord issues, and pelvic foetal interface or labour issues. All these factors affect oxygen delivery to the newborn. The severity of this determines whether the baby ends up with cerebral palsy or mild brain injury,” said Dr Kimani Ngaruiya, a consultant paediatrician.

There is no definitive cure for this condition yet, thus all interventions are geared toward supportive management.

When she is not eking out a living, Kimondiu meets up with other mothers with children with cerebral palsy to share their experiences and give each other hope. She says psychosocial support is key for caregivers.

“I usually tell caregivers and parents in my community that it is important to take these children for therapy, so that their bones do not become stiff. Once a week is okay, but also the government should subsidise therapy because most parents cannot afford it,” she adds. Kimondiu is also calling on the government to reactivate cash transfers services to children with disability, which she says came to an end for some parents some two years ago.

Statistics by the National Council for Persons with Disabilities in Kenya show 2,824 registered persons with cerebral palsy below the age of 18 with no definite data collected about children with cerebral palsy in Kenya. The figure is expected to be updated.

According to Centers for Disease Control and Prevention (CDC), recent population-based studies from around the world report prevalence estimates of cerebral palsy ranging from one to nearly four per 1,000 live births or per 1,000 children.  In some parts of the world, however, there is evidence that the prevalence of cerebral palsy has declined, particularly for children born at moderately or very low birth weight. A paper published in July this year in the African Journal of Disability found that many barriers exist in the care of children with disabilities in East Africa, especially children with cerebral palsy. Some of the barriers include stigma and a lack of human and infrastructural resources.