The Boy With A New Head

The Boy With A New Head

Petero Byakatonda, a 13-year-old boy from a remote village in Uganda, suffers from a genetic disorder called Crouzon’s syndrome. The illness affects around one in 10,000 newborns and is normally treated within a few months of birth. But because of Petero’s isolation, he was diagnosed only recently, and it is incredible that he is still alive.

In Crouzon’s syndrome, the bones of the skull are fused together permanently so the head cannot expand normally as the brain grows. The brain is therefore forced to grow in the direction of least resistance. This, as leading craniofacial surgeon Dr Kenneth Salyer explains, can lead to constriction “to the point of herniation of the base of the brain, and death.” In altering the structure of Petero’s skull, Salyer and his team may be able to give the boy some self-confidence, restore his sight and save his life. But in order for Petero’s surgery to be successful, says Salyer, there is a “major need for him to be treated immediately.”

All his life, Petero’s misshapen head and bulging eyes have meant that he has been feared and tormented by other children in his village. “They used to bully me all the time,” he says. His mother, Dorothea, explains that kids used to throw stones at Petero every time he walked to the well. He was treated like a person at home but an animal everywhere else. Now, however, a Dallas-based surgical team offers hope.

Petero first came to the attention of Kenneth Salyer when a Ugandan social worker was visiting Petero’s village. She took a photograph of Petero and showed it to a doctor friend who then showed it to Salyer. Though he is based in America, Salyer was interested in Petero in his capacity as head of a charity called the World Craniofacial Foundation. With money donated by this foundation, Petero, having never left his village before, now finds himself leaving his family to travel across the world for a series of life-threatening operations.

As he arrives in the US, Petero is fascinated by everything he sees. “There are so many lights,” he reflects as a taxi takes him and social worker Immaculate to the house that will be their home for the near future. “There is no darkness anywhere”. But it is not just an alien culture to which Petero must become accustomed – over the next seven months, he will spend a great deal of time in hospital as he undergoes a series of operations to completely rebuild his head.

After weeks of tests and medical examinations, Petero is deemed ready for surgery and is wheeled into the operating theatre, clutching his new toy phone. In this first operation, Salyer and his team will reconstruct the top of the skull and take the pressure off the brain and the optic nerve. The surgery is incredibly complex. As surgeons make an incision in Petero’s scalp, they discover a venous plexus – an abnormal collection of blood vessels – which increases the chances of bleeding. They must then peel the skin back over Petero’s face, before drilling a series of holes in his skull and moving his brain away from the bone. As they remove a large piece of skull, the pressure on Petero’s brain is eased and his sight is effectively saved. But now the hard work of restructuring the head and face begins.

Two months after his first operation, the change in Petero is hard to believe. His head now looks normal, but perhaps the most amazing transformation is in his personality. Whereas he used to be a shy, reclusive boy, ashamed to show his face in public, he is now playful, excited and outgoing. But with two more operations and many months of recovery yet to go, Petero still has a long journey ahead of him.