Resilience-Feature
Five-year-old Felix Nderitu sits patiently on a small blue plastic chair. He marvels at the camera hanging across my neck. Whenever our eyes lock, he breaks into an innocent, friendly smile.
“He used to be very shy and uncomfortable around strangers but consistent therapy has driven out that fear. He is no longer afraid of being in the midst of unfamiliar faces or crowds,” says Felix’s mother, Magdalene Wangeci. Felix suffers from Cerebral Palsy (CP) a condition caused by damage to or disruptions in development of brain areas responsible for muscle control.
The condition can happen before, during, shortly after birth or in the first few years of a child’s life, when the brain is still developing. When it strikes, it affects movement and posture. Cerebral Palsy Alliance Research Foundation estimates that about 18 million people in the world have some form of cerebral palsy.
A recent population-based study by the US Centre for Disease Control and Prevention (CDC) on the prevalence estimates that 1 to nearly 4 per 1,000 children in the world have CP. The CDC notes that CP is the most common motor disability in childhood. Locally, it estimated that about 150,000 people are living with the condition.
With no known cure for the condition, physicians recommend a combination of therapy and medication to improve the overall wellbeing of the patient. Simon Mwangi, an Occupation Therapist at the Metropolitan Sanctuary (a rehabilitation centre in Kamakwa in the outskirts of Nyeri town that provides free therapy for children with different forms of disability) says that through consistent therapy, CP patients can improve their physical and motor skills.
“The long-term goal is for the child to be able to do something with their hands because we believe everybody is an occupation person. In occupational therapy, the child is helped to achieve the milestones through activities that exercise their muscles,” says Mwangi.
For Wangeci, watching her second born sit without support is a huge accomplishment. It is one of the many milestones that she is happy about since she started taking her child for therapy sessions to help manage his deliberating condition. “Before the therapy, you would put Felix on the chair and he would flop to the side or keel forward. But now he sits by himself and without support. He is also crawling. It is not a smooth crawl but it is still remarkable. His first crawl was from the table room to the kitchen,” says Wangeci.
Simon Mwangi, an Occupation Therapist at the Metropolitan Sanctuary displays a sleeping aid used to prevent hip migration for children with Cerebral Palsy. Mwangi says that through consistent therapy, CP patients can improve the physical and motor skills
Felix was born normal but a bout of jaundice struck him two weeks after birth. He was admitted in two hospitals in Nyeri where a series of medical tests showed that he had high bilirubin levels in his blood. Bilirubin is a yellowish pigment that is made during the breakdown of red blood cells. If left unchecked, can cause CP.
Wangeci says that her son was eventually discharged but during one of the immunization clinics, a nurse diagnosed him with some delayed milestones. What Wangeci would later find out during a visit to a pediatrician, was the jaundice had caused some damage to the brain disrupting his ability to control his muscles. The news that Felix had CP momentarily dashed all the dreams she had for her child and took a toll on her mental health.
“I had been advised to start him on therapy immediately. However, due to the weight of the new reality of Felix’s condition, I sunk into depression. I wasn’t certain about my son’s future. What made it worse was that I had been asked to take him for therapy in the same facility where he was first admitted with jaundice,” she narrated. The mother of three says that it took support of her family for her to pull herself together and start seeking help for herself and her son. Her family also secured sponsorship to support her psychiatric care and occupational therapy for Felix.
“I realized that parents whose children have CP are weak psychologically. You have to heal first before you can start helping your child. Once you heal, you also accept your child’s condition and that is when you can start the journey towards the child’s healing,” she says. When we met with Wangeci and Felix, they had just had a therapy session. She has been attending the session for the last two-and-a-half years. In addition to rehabilitating her child, the sanctuary has also restored hope to Wangeci that Felix may live a full life.
“Cerebral Palsy is not healed completely but therapy helps the child achieve certain milestones, they also gain something during the sessions,” she says. It is not just Wangeci who harbours big ambitions for her son, Margaret Wambui is optimistic that her five-year old grand-daughter, Melissa Wanjiru, will eventually catch up with her twin sister. She has been bringing her grand-daughter for therapy for seven months and in her estimation, Melissa is slowly regaining some of the motor functions she lost.
“Melissa can sit with support. She is also attempting to stand on her own and when you put her to sleep; she can now change her sleeping position. Her dysarthria (the slow and slurred speech) is not as bad as it was and I am optimistic she will eventually utter her first words,” remarks Wambui.
Melissa had enjoyed a normal life until 2019 when she contracted Meningitis at the age of one and after being hospitalized for two months, her life took a detour for the worst. The infection dealt a blow to the development of her speech and eroded the little progress that she had made with her motor skills.
Esther Wairimu cuddles her grand-daughter Princess Sophia Wairimu. Sophia’s mother abandoned her at the age of six months after she realized that Sophia’s condition would never improve.
“After she was discharged, she had lost her head control, she could not sit up or stand without support,” narrates Wambui. Wambui forms the increasing number of grandparents who have stepped in as caregivers for their ailing grandchildren. She says that she took in her grand-daughter due to the financial strain and the mental anguish that Melissa’s condition had left her children in.
“Her parents are not well off, that is why I took up the responsibility of caring for Melissa. They also have too much on their in-tray. In addition to taking care of her two siblings, her mother is still in school,” she says. While Melissa is lucky to have her parents check in on her every now and then, Princess Sophia Wairimu is not that lucky. At the tender age of six months, her mother upped and left her under the care of her grandparents. Last year, her father passed away due to Diabetes complications leaving her a partial orphan.
Princess suffers from Congenital CP a severe form of the condition that makes her fully dependent on her caregivers for everything. Her grandmother Esther Wairimu, says that Princess’s condition had become a cause of conflict between her son and her daughter in law forcing her to intervene.
“I do not judge her. Giving birth to a child with the kind of complications Princess had, is not easy so when she learnt that her child had severe CP, she left,” she tells us. Her birth was also a difficult one. She came to the word through assisted delivery, a procedure also known as vacuum extraction. When the medics noticed that she had CP, they immediately transferred her new born to a nursery. For seven months, Wairimu says, they hoped and prayed that her condition would be reversed.
Today, six years down the line Princess is fully dependent on her caregivers. Even though her grandmother has already resigned to the fact that Princess will never become independent, she remains committed to ensuring that her grand-daughter doesn’t miss any of her therapy sessions.
“Due to the severity of her condition, Princess is not aware of her surroundings or us, her caregivers. All the same, I am determined to give her whatever she needs,” says Wairimu. Even though the severity of the three children CP varies, these three women are confronted by a set of similar challenges. The lack of an emotional support system for parents whose children have CP tops their list of difficulties that they have to contend with.
Wairimu laments that since society still discriminates against mothers whose children are living with the disability, for many of them, therapy centers offer them a safe haven where they debrief and encourage each other. “It is really difficult for us as mothers because you feel stigmatized because of your child. We are the outcasts in the community and that is why we isolate ourselves. When I first came for therapy, I was able to interact with other mothers and after seeing their children I felt encouraged to continue with the journey,” Wairimu tells us.
In addition to the lack of psychosocial support, CP caregivers are also confounded by a myriad of economic challenges. First, free rehabilitation centres for CP patients are hard to come by so a parent has to part with Sh500 in public hospitals to as much as Sh 4,000 in private facilities for a therapy session.
This means that many of these children remain locked out of these essential therapy sessions due to financial constraints. In order to attend a session, the caregivers say that they mostly opt for taxi services which also come at a premium. And before they can catch a break, they are confronted by the high cost of diapers where a 10-pack of diapers costs Sh800.
Five-year-old Melissa Wanjiru plays with her grandmother’s button during the interview. According to Margaret Wambui, Melissa contracted Cerebral Palsy at the age of one.
Photos by Wangari Mwangi
Both Wambui and Wairimu say a majority of the caregivers lack sustainable income generating activities forcing them to depend on donations and handouts to help them care for their children. These two grannies reveal that many young caregivers have to choose between prioritizing medication, food and diapers against their ever-depleting monetary resources.
“I am one of the lucky few who is benefiting from the free rehabilitation services from this sanctuary. Mothers of CP children out there need a lot of support in getting by because securing a job is hard. These children need diapers, a balanced diet, standing and sitting aids that also come at a cost. They also need anticonvulsant drugs which are quite costly and I wish the government would intervene even through stocking these drugs in public hospitals,” says Wairimu.
But even as these caregivers religiously take their children for therapy with the hope of helping their children achieve the significant milestone, they lament over the lack of integrated schools to accommodate their children. Wangeci tells us she had already started scouting for a school in Nyeri that could accommodate Felix without success.
“He has really progressed very well and I believe he can catch-up academically. However, getting a school nearby to accommodate Felix with his condition is very difficult. The nearest school is in Thika but the entry requirements automatically lock him out,” she says.
The seclusion also extends to recreation activities with Wangeci pointing out that most recreational facilities lock out children living with the condition. “It is really difficult for these children to be incorporated into some of the activities like paly so most times, parents opt to keep them at home,” says Wangeci.
Despite all these challenges that come with having a CP child, these three women are quick to discourage other caregivers from locking up their children due to the stigma. Their advice is for parents to accept the situation of their children and seek medical assistance.
“Hiding your child is the same as worsening the child’s condition because they will not receive the help they need,” says Wambui in her parting shot.