Robbed of normal childhood by rare disease

Ntsoaki Motaung

At seven years old, ‘Mamotšoane Tšephe’s child is unable to walk and wears diapers because he has cerebral palsy and the mother says this was caused by medical malpractice.

Cerebral palsy is a group of disorders that affect a person’s movement, posture, and balance.

Itis caused by abnormal brain development or damage to the developing brain and usually happens before a child is born, but can also occur at birth or in early infancy.

TÅ¡ephe believes her child would not have cerebral palsy if she was given the attention she needed during labour.

She told a gathering during the commemoration of the Rare Disease Day organised by Botho University in Maseru that she would have given birth to a healthy baby if it was not for the incompetence of the health professionals.

Rare Disease Day is an observance held worldwide on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

Tšephe broke into tears while narrating how she learned a few moments after giving birth that the child “seems to have cerebral palsy”.

“I was told the baby might delay to develop or do other things like walking, talking or might not do them at all,” she recalled.

She said she was told that her child’s brain did not receive adequate levels of oxygen during birth.

“I was told that there were complications when I gave birth and was supposed to have been taken to the theatre but that was not done. That is why today I have a child who is seven years but still acts like a newborn today,” she said.

“By not doing what they are supposed to do, health professionals leave us with lifetime burdens,” she added as she broke into tears again.

TÅ¡ephe said seven years later, her child cannot walk, talk, sit, or keep a head up. The child still uses nappies and requires certain kinds of food, she said.

She called on the health professionals to give their patients the utmost attention and care to ensure that this kind of thing does not happen.

“I wish to say to health professionals that when someone asks for help they should attend to them and not ignore them as if they are being asked to do something which is not part of their responsibilities,” she said.

TÅ¡ephe also told the gathering that raising a child with cerebral palsy as a young and single mother was a challenge that was exacerbated by the lack of necessary equipment in Lesotho.

If things were done right in the country, she said, she was supposed to take her child to occupational therapy at least once every week but said she was only able to do so once a month.

Rare Diseases Specialist, Nthabeleng Ramoeli, who is also the founder of the Rare Diseases Lesotho Association said the chances that Tšephe’s baby will ever walk are slim.

This was because the child was recently diagnosed with six types of rare diseases, Ramoeli said.

She, however, indicated that TÅ¡ephe was lucky to have her children diagnosed with cerebral palsy a few moments after they were born.

She said some mothers usually find out later when they see their children not developing as expected.

According to the Multi Agency International Training (MAITS), cerebral palsy is the main cause of physical disability in childhood.

Changes in muscle tone and movement, says MAITS, are the main characteristics, impairing functionality, hindering independence, and interfering with the affected person’s quality of life.

As per Mo-Rate Cerebral Palsy Association Lesotho database, there are currently 134 children with cerebral palsy in the 10 districts of Lesotho that the association is directly working with.

According to this database, the district with highest number of children with cerebral palsy is Leribe (45) followed by Maseru (34), Botha-Bothe (18), Qacha’s Nek (17), Mafeteng (12), Mohale’s Hoek (11), Thaba-Tseka (10), Berea (seven), and Mokhotlong (three).

It is not clear how many children in Quthing have cerebral palsy.

It is estimated that there are 77 girls and 57 boys with cerebral palsy.

According to the Centers for Disease Control and Prevention (CDC), cerebral palsy is the most common motor disability in childhood.

It states: “Recent population-based studies from around the world report prevalence estimates of cerebral palsy ranging from 1 to nearly 4 per 1,000 live births or per 1,000 children. The prevalence of cerebral palsy is higher for children born preterm or at low birthweight.”