Data Hub

Cerebral palsy: The silent disability in Kenyan homes

CELEBRALPALSY

Occupational therapist Jael Nangila attends to child at the Cerebral Palsy Society of Kenya school on October 12 in Nairobi. The school provides training and rehabilitation services for children living with cerebral palsy. PHOTO | SALATON NJAU | NMG

Summary

  • CP affects the development of a person’s ability to control his or her muscles, movement and body posture.
  • It can range from a weakness in one hand, to an almost complete lack of voluntary movement.

When Sarah Moraa visited Gucha Level Five Hospital to deliver her second child, she had no idea of the ordeal that lay ahead.

“After being admitted, I went through a long, protracted period of labour. The pain and discomfort seemed to come in endless waves that only increased my agony,” she recalls.

Britney Adhiambo was finally born after about 33 hours of labour in January 2010, but did not immediately cry as is expected of a newborn that has just made her grand entry into the world outside of her mother’s womb.

Medics at the hospital told her not to breastfeed the child immediately she arrived at home.

“The doctor told me not to breastfeed the child when I went home. He told me the child was tired after a long period of labour,” says Moraa.

She obeyed the instructions and then breastfed the baby after a few days.

Britney’s growth was, however, slow compared to that of other babies at that stage, and at four months, her worried mother took her to Kenyatta National Hospital (KNH).

It was at KNH that doctors discovered that she had cerebral palsy (CP).

“I was shocked when they told me that she would live with the condition for the rest of her life. But with time I came to accept it and decided to do all I can to ensure she lives a normal life as possible,” she says.

Ms Moraa’s predicament is one that millions of parents and guardians across the country face. It is estimated that locally, up to three percent of the population is living with the condition that is largely attributed to brain damage at birth or at the first few weeks after birth.

Around the world, more than 17 million people are living with this disability. Another 350 million family members and caregivers are closely connected to a child or adult with cerebral palsy. It is the most common physical disability in childhood.

For these parents and guardians, the diagnosis that their bundle of joy has cerebral palsy is a life defining moment. Some, like Ms Moraa accept the condition, learn all about it and then make sacrifices to endure that their children live as near-normal lives as possible.

Then there are others who buy into the number of misconceptions attached to the causes of the condition including witchcraft, marital infidelity and cross generational curses due to some evil act by the child’s ancestors. Often, this group treats hides their children at home.

When Ms Moraa found out about her daughter’s condition, she enrolled as a caregiver at Cerebral Palsy Society of Kenya (CPSK), a non-governmental organisation that helps parents and guardians to help their children manage the condition.

It was clear, she says, that if Britney was to live up to her full potential, she would need long-term rehabilitation to train and regain lost functional skills.

CP affects the development of a person’s ability to control his or her muscles, movement and body posture. It can range from a weakness in one hand, to an almost complete lack of voluntary movement.

In Britney’s case Moraa says the condition can result in convulsions that sometimes affect her daughter as she sleeps.

“I am conscious of her movements when we sleep so that she does not convulse for long without me waking up to help her,” the mother of three tells the Business Daily.

Whenever the bubbly 10-year old convulses, Ms Moraa gently places her on her side and loosens any tight clothing on her until the episode ends.

Although the convulsions are a source of great discomfort and distress to the child, they are not fatal, and can be managed by medication. But when Britney misses her medication for a day or two, she is likely to experience severe convulsions, which can last between two to 10 minutes.

Her doctors have recommended Phenobarbital and Trileptal for the condition. The drugs, which cost around Sh7,000 a month, are not covered by the National Hospital Insurance Fund.

This means that Britney’s parents have to pay for her treatment and medication out of their own pockets.

It has not helped that the economic downturn caused by the coronavirus pandemic has made things even more difficult due to pay cuts and delays in salary payment.

“It is currently difficult for my husband and I to purchase the medication. This has exposed Britney to the possibility of more convulsions due to lack of medication. I can only hope and pray that she sleeps peacefully every night,” says Ms Moraa.

This is besides other resources required such as transport, medical or rehabilitation costs, assistive devices and consultation fees for regular reviews.

Unfortunately for children living with CP, very few facilities and government schools have programmes that can cater for their condition.

In Nairobi, only KNH and Mama Lucy hospitals have clinics for children with CP.

To add to the challenges, these facilities can only provide therapy sessions for children aged five and below, meaning that parents of older children have to seek services at private centres that are often expensive.

A physiotherapy session at Nairobi Hospital costs between Sh3,500 to Sh4,000 while one at Aga Khan Hospital costs Sh2,500. Parents and guardians fork out Sh2,900 at Gertrude’s, Sh500 at KNH while CPSK charges Sh100.

Official Kenyan statistics for CP are unavailable as the government is yet to collect data on those living with it.

The sad scenario persists even as the CP community celebrated World Cerebral Palsy Day on October 6.

Ms Dorothy Mwangi, chairperson of CPSK says the government could have taken advantage of the last census to capture data on the number of people living with CP.

“Prior to the last national census, we petitioned the government to also count the people with CP for purposes of including them in assistance programmes for disabled people. Our request was ignored, which is a setback to efforts to identify and manage the condition among Kenyans living with the condition,” says Ms Mwangi.

On of the biggest hurdles to ensuring that people living with CP lead meaningful productive lives is social stigma. Those living with the condition in such environment’s are often uneducated and locked up in homes, out of sight from the rest of the community.

While the parents and other caregivers’ concern is understandable, Ms Mwangi, says they should not confine them in homes.

“Some of these children lack access to educational facilities where their condition can be managed. If they are allowed to leave the home unaccompanied, they are exposed to violence, defilement and other dangers at the hands of criminal elements that will take advantage of their delicate condition,” she says.

“As a result, the only way they can be kept safe is by staying at home, where they will not be at risk. It is not the parents’ wish to keep them confined, but it is done in the best interest of the child,” she says.

Mr Douglas Misiko, an occupational therapist at CPSK says parents should be keen to ensure that CP children don’t miss their therapy sessions.

“Besides improving the quality of life for children, their parents or caretakers, their families and communities, the training will also help prevent secondary disabilities,” observes Mr Misiko.

At the school, children with CP are trained to help them move their muscles and do normal activities like taking care of personal hygiene and basic communication with caregivers.

Learners are also trained in diverse fields such as painting, bead-work, music and even participate in the Scout movement.

“We train them in these activities to improve their hand-eye coordination, their ability to hold objects and also alert their caregivers of needs or sensations such as pain, hunger, thirst and discomfort,” says Mr Misiko.

The school that offers physiotherapy sessions caters for approximately 30 learners mostly drawn from Eastlands and the surrounding areas including Athi River, Utawala, Mukuru kwa Njenga, Kayole and Umoja.

Mr Misiko also runs the society’s CP outreach therapy programme, and is always on his motorbike riding to meet clients in places like Dandora, Eastleigh, Pipeline, Mlolongo, Buru Buru, Imara Daima, South B and Komarock.

For couples planning to conceive, medical experts recommend consulting a doctor before becoming pregnant to assess reproductive health.

Comprehensive assessment will then be done, including questions about social habits, medical history, and other factors that may influence pregnancy. This will not, however guarantee a CP-free outcome for the baby, since the exact causes are not known.

Despite the cards that life has dealt her, Ms Moraa remains proud to be Britney’s mother.

“She has been nothing but a blessing to me. I have learnt so much from loving and taking care of her,” says Ms Moraa.

She now dreams of starting a school for children with CP in her native Kisii County, where children with the condition are often kept at home.

“I have a burning desire to start a school back home where children with CP can be trained to acquire basic life as well as enterprise skills that will enable them to generate income and become useful members of society,” she says.

She believes the school will also serve children with CP from the neighbouring Nyamira, Narok, Migori, Homa Bay and Kisumu counties.

“My daughter Britney got a precious second chance at living a productive life at the CPSK School. I also wish to use the school in the near future to provide the same opportunity to the children in those areas so that they can achieve their potential,” she says.