A 16-year old mother from Otjozondjupa region expected a healthy baby boy and she was excited to become a mother, as this would make her feel complete in her community. To her dismay and consternation, her son was born with a rare disease, called cephalic disorder (enlarged head).

The birth took place in Grootfontein in 2008. After the birth the mother and baby were transferred to Windhoek for medical attention. When this proved fruitless, they returned to their home village, Okatjoruu, where they still live in the most desperate of circumstances, not knowing what will happen next.

“My son cannot speak, move or play, but he can hear. Last year we went back to Windhoek for further medical attention. We stayed in the hospital for more than five months, while doctors attempted to drain something from my boy’s head, but nothing happened.”

Vroutjie is a single unemployed mother. She hopes that one day someone will be able to help her four year old son, who looks as if he is only six months old. The father of her son disappeared and the last she heard he was spotted somewhere in Windhoek.

“My son needs special attention, so I cannot go out to find work. Even if I did, I will have to pay someone to look after him when I am out to work. I do not know what to do and I hope that one day someone will help us.”

Vroutjie is not aware of any financial aid programmes for children living with disabilities and she looked shocked when asked the question. “I don’t know and I never heard of it,” she said in disbelief.

Cephalic disorders are not necessarily the result of one particular factor, but can be caused by hereditary or genetic conditions, nutritional deficiencies, or by environmental exposure during pregnancy, such as medication taken by the mother, maternal infection, or exposure to radiation. Certain cephalic disorders ensue when the cranial sutures (the fibrous joints that connect the bones of the skull) join prematurely. Most cephalic disorders are caused by a disturbance very early in the growth of the fetal nervous system.