CP victims need compassion, not contempt

Loveness Kamwendo recalls the day she gave birth to her 33-year-old son Benjamin, on the roadside in Murehwa, Mashonaland East province. Despite the difficult circumstances of the birth, her view then was that giving birth to a healthy child was a blessing.

Loveness Kamwendo: has devoted her whole life to caring for Benjamin, now aged 33.
Loveness Kamwendo: has devoted her whole life to caring for Benjamin, now aged 33.

A few days later, her world began to collapse around her as it became clear that Benjamin would need his mother’s lifelong care.

“I was on my way to Murehwa Hospital after realising that I was in labour. It was more than 10 kilometers away from my homestead. Suddenly my condition changed rapidly and I ended up delivering my baby on the roadside, before I reached the hospital,” said Kamwendo.

With the help of a Good Samaritan, she finally made it to the hospital with her son, who never showed any signs of having any complications. But on the fourth day as she was about to be discharged, Benjamin was struck down with cerebral palsy. “He had to be resuscitated after doctors diagnosed him with jaundice and tetanus. They told me that he had contracted the viruses during birth,” she said.

Defined as a neurological condition that causes physical disability in human development, cerebral palsy affects the brain and the nervous system.

The latest Zimbabwe Demographic Health Survey noted that three out of every 10 local births are not assisted either a traditional midwife or an experienced family relative, especially in the rural areas. Exposure to infections is high in such cases, leading to a variety of child deformities.

Some of the known possible causes of CP include an infection in the early part of pregnancy, a difficult or premature birth, a cerebral bleed more likely following a premature birth, abnormal brain development, depravation of oxygen during birth or an infection or accident affecting the brain in the early stages of a child’s life.

An estimated 15 million people suffer from the disease worldwide. “Incidences of people with CP are on the increase and there is no pre-birth test or known cure,” says the Cerebral Palsy Support Network. People with CP are healthy and can expect a normal life span, but speech, vision, hearing, epilepsy and intellectual disability are commonly associated with the condition.

Kamwendo said caring for Benjamin has been a major challenge, especially now that he is an adult. She carries him on her back each time he is needed away from home. Her family of six shares a room on a third floor of Matapi Flats hostel in Mbare, whre they have lived since 1991. All efforts to secure better accommodation have failed.

“Benjamin is a shy person and whenever he wants to use the toilet, all the other family members have to go outside because he cannot walk and it is now laborious for us to carry him to the toilet,” said Kamwendo.

“The other day, I left my son in his wheelchair by the corridor when I went to the sink to do the dishes, only to find him bleeding on the forehead when I came back. There are families who do not understand and accept people with disability,” she said.

Samantha Sibanda, the director of Signs of Hope, an organisation working with families and people living with disability in Mbare, said there was need for government intervention to ensure that families such as the Kamwendos became home owners.

“Taking care of a person with disability is not only labour intensive but the costs associated with their welfare are too much. The majority of these mothers cannot go to work because they need to be with their children all the time,” said Sibanda.

She said because the majority of them cannot afford to take their children to school, disabled children have no access to education. “It is expensive to take them to centres for the disabled and within their homes, people with disability experience stigma from relatives, friends and the community in general.

“As a result some parents exclude, abandon and hide their children. This can result in some of them being abused and denied basic human rights such as the right to health and social integration among others,” said Sibanda.

Beloved Makina, the president of the Paediatrics Neurological Disorders Foundation Trust, said cerebral palsy could be cured but early treatment would increase the chances of overcoming developmental disabilities.

“The availability of physical and occupational therapy, drugs to control seizures, relax muscle spasms and alleviate pain, surgery to correct anatomical abnormalities, braces and other orthotic devices, wheel chairs and rolling walkers and communication aids such as computers with attached voice synthesisers are important,” said Makina.

Although his organisation raises awareness through education, Makina said there was need for more engagement and participation by communities in promoting the removal of the stigma against persons living with the condition.

Kamwendo said: “It is unfortunate that rural hospitals were very far those days. The establishment of waiting homes was a welcome development but for us, it was too late: the damage had already been done. Benjamin underwent physiotherapy but he cannot walk, talk or sit. He can only eat and drink by himself, but for everything else he needs help.”

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