Boy’s medical miracle

Aug 11, 2006

A 14-year-old Ugandan boy from Kiteredde in Bukomansimbi county, Masaka district has successfully recovered from four major surgeries to reconstruct his abnormal skull to free his brain from extreme pressure that had slowed his physical and mental development.

By Samuel Muwanguzi
in Dallas, Texas, USA

A 14-year-old Ugandan boy from Kiteredde in Bukomansimbi county, Masaka district has successfully recovered from four major surgeries to reconstruct his abnormal skull to free his brain from extreme pressure that had slowed his physical and mental development.
Peter Byakatonda, the first child to Paul Akizimaana and Fayda Dorosea Mugwaneza, underwent the life-saving operations when his cone-shaped skull was dismantled and remodelled.
“Rebuilding his skull into a more natural shape with restorable plates was like solving a jigsaw puzzle,” Dr. Raul Barcelo, a member of the five-man team craniofacial plastic surgeons who conducted the procedures on Byakatonda, told ABC television Channel Eight News in Dallas, United States of America recently.
The pressure on his brain is already gone; his body functions that we feared had been lost forever have miraculously returned, and for the first time in his life, he can close his eyelids while his eyesight is gradually coming back,” Barcelo said.
The decisive operations on Byakatonda were headed by Dr. Kenneth Salyer, an international craniofacial plastic surgeon at the Dallas-based Medical City Children’s hospital in Texas.
Dr. David Stager, an ophthalmology specialist, led the team that conducted two surgeries on Byakatonda to realign his eyes to enable him focus straight.
The boy will still have to undergo another major surgery to bring more balance to his face and eyes, when he clocks 18 years.
When he returns to Uganda, his health condition will be closely monitored by Dr. Andrew Hodgers of the Australian-based Christian Blind Mission, now resident in Uganda.
“The life-changing medical care for Byakatonda, including all the living expenses on him and his guardian Immaculate Nanyonga during their nearly seven-month stay in the US, cost about US$400,000 (about sh720m),” Ms. Sue Blackwood, the executive director of World Craniofacial Foundation (WCF), a US-based NGO which coordinated the surgeries for the boy, told The New Vision in a telephone interview yesterday.
She clarified that although the estimated cost of the entire procedure was valued in monetary terms, all the medical care, facilities and other services were donations to the foundation that coordinated the surgery.
Byakatonda, the oldest of six siblings, suffered from severe headaches with tears constantly flowing from his bulging, unblinking and nearly blind eyes caused by a health condition known as Crouzon’s Syndrome.
“It is extraordinarily rare to see a teenager with such a severe case of Crouzon’s Syndrome,” Barcelo told Janet James of ABC television recently.
He also said in the US, “symptoms of the Crouzon’s Syndrome are typically detected early and corrected before a child’s first birthday.”
Craniofacial plastic surgeons at the Medical City Children hospital said the syndrome is caused by premature fusion of the natural gaps in the skull plates, leading to enormous pressure on the brain and resulting into slow cognitive and physical development.
For more than 13 years, Byakatonda was a social outcast in his village and at school.
Narrating his ordeal in Luganda, Byakatonda recalls, “Because of my strange appearance and abnormal shape of my head and eyes, I was constantly beaten, insulted and called a monster or a devil. I used to feel very bad but I had nothing to do.”
“When I went to Kiteredde Primary school in P.1, master Byekwaso sent me away after I had spent only three days in class. He claimed that whenever I tried to read or write, my tears dampened and stained papers.
“I was also never allowed to sit with my fellow classmates because teachers said my facial appearance frightened the children away from school.”
Without a trace of bitterness or anger in his voice,Byakatonda said after he was sent away from school, he enjoyed looking after cattle because they never called him names.
“Cows became my good friends because they never abused and did not care how I looked. They provided me company when my peers rejected me,” Byakatonda said.
He also revealed how he had to stay at home to help his mother in the garden, fetch water from the well to cook food for his siblings then attending school.
Following the successful surgery, Byakatonda is on the mend both mentally and physically.
“I now feel a lot better. I can speak some English, recite the alphabet, count numbers and even dance to American music,” he said as he typed away on his speech-activated learning enhancing toy at their apartment in downtown Dallas.
Standing at slightly over four feet and weighing only 32kg, byakatonda is obviously a lot shorter and lighter than the average 14-year-old but he is not deterred by this.
Commenting about his radical physical transformation, byakatonda, who appears to have rapidly regained his self esteem, said, “I have now changed a lot and I think many people at home will not recognise me. I want to go back home and return to school and become a doctor to treat children.”
Nanyonga said, “Petero is now a more relaxed and very confident boy and is not as forgetful as he was before the operations.
The volunteer guardian, a Makerere university graduate of development studies and a licensed social worker, said she is not related to Petero but accepted to accompany him to the US since he did not have anybody else to go with him.
“His parents do not know English and could not travel with him due to language barrier. Some of his educated relatives demanded to be paid money as a precondition to accompany him,” she explained.
Nanyonga said since her contract at Katalemwa Cheshire home for Disabled Children and rehabilitation Services, where she met Byakatonda for the first time in 2004, had expired, she was approached by Dr. Hodgers to accompany ‘Byaka’ to the US.
Byakatonda and his ‘maama’ Nanyonga, left the US yesterday and were expected in Uganda today.
The ABC Television Network has already described Byakatonda’s life-changing surgery as a “medical miracle in Dallas”.
Ends

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