When he was born in April 2016, Mustafa Godana was a healthy baby and the joy of his family. But a month later, his head began to swell and would not stop.
Today, Mustafa’s head is almost as big as his body and his eyes are sunken, leaving only the whites visible.
Like any parent would, his father, Jarso Godana, and mother took him to different health centres around Kiamaiko in Mathare.
“We took him to the local clinics and he was given antibiotics, but nothing changed,” said Godana.
Despite the numerous trips to health centres, he believed that his second child had been cursed. So when he saw no improvement, he decide to take his son to traditional healers in his home county of Marsabit.
Community health volunteers helped him raise Sh20,000 to cater for the journey.
But all that came out of that long trip were scars on the child’s head - the elders who attended to the boy used hot twigs to press the head, ostensibly to stop it from growing.
“The traditional doctors in Marsabit used sticks usually used for brushing teeth to burn his head to stop it from growing,” said the father.
“There were no changes except for the scars on the boy’s head and the family cannot raise any more funds for hospital treatment,” said Rahma Wako, a community health volunteer.
Today, Mustafa’s chest is less than an inch wide and he snorts loudly as he tries to breathe. He can only take in fluids, unable to keep any solid food down.
“He won’t stop crying, day and night,” said his father.
Unable to bear her son’s suffering, Mustafa’s mother left with her older son.
“I received a call from my wife’s people asking me why I had locked the door. When I rushed home, I found her gone, with all her belongings. Mustafa was left crying on the bed,” said Godana, a night guard at the nearby Baba Dogo estate.
He said he chose to quit his job to take care of his son.
“He cries every moment he’s awake - day and night. I cannot step out of the house unless he is asleep,” said Godana.
He now depends on health volunteers, who buys the baby diapers and milk, and help him to wash the child’s clothes.
“He is two years old but he cannot stand. He survives on fluids because food comes out of his nose when he tries to eat,” said the father.
Last May, Mustafa was taken to Kenyatta National Hospital through referral from the community health volunteers.
He was diagnosed with extreme hydrocephalus (also called water on the brain), a rare condition that makes a child’s head swell to make room for excess fluid.
“The doctor told me he could not see the brain and, therefore, could not perform surgery to drain the fluids from the head,” said Godana.
Neighbours said they had been seeing him leave the house to buy diapers but never saw the baby. Concerned, they sought the attention of the health volunteers, who have stepped in to help.
“I did not know that the family had returned. So when the neighbours called to inform me, I rushed there only to find father in charge of everything,” said Rahma.