David Katongole is a desperate man with memories of pain since his son was born blind. He has given up everything to take care of him, writes Samuel Lutwama
It is coming to 6:00pm and William Street in Kampala is still crowded as people stream towards the taxi parks, heading home. A young man with a megaphone makes desperate calls about his blind child.
The child is in a wheelchair, moving his head from side-to-side, his smile exposing a gap in his teeth. But, what dampens his smile is that this little boy was born without an eye socket.
Touched by the father’s plight, I followed him up the next day to a small room at Great Motel on Rubaga Road. David Katongole, 34, is a desperate man with memories of pain since his son was born.
“My late wife, Jennifer Nansamba, had an easy pregnancy, but a dramatic birth. She delivered in the hands of our local midwife in Mpumudde village, Lwengo district.
“We named him Prince Charles Sebuuma since his birth coincided with the visit of Prince Charles in 2007 during the Commonwealth meeting in Kampala,” Katongole says.
“But sadly, our baby’s eyes could not open at birth. The local midwife assured us that the child was, perhaps, tired — that his eyes would open shortly. But little did we know that the fate of our son was sealed. The baby was our first child," he adds.
However, Katongole has a daughter from an earlier relationship who has no medical complications. The silver lining is that Sebuuma does not have any other complications.
“He plays and feeds normally, like children his age,” says Katongole.
Keeping the faith
A week after Sebuuma’s birth, Katongole and Nansamba were apprehensive and were advised by the midwife to take their child to a nearby health centre. The couple was referred to Mulago Hospital for proper medical examination.
They were told that Sebuuma was born with no eyes and would not be able to see for the rest of his life.
They sought a second opinion at Mengo Hospital and were told that Sebuuma was suffering from a rare blindness. And that was the beginning of Katongole’s misery.
He says: “I have not known peace in the last couple of years. I lost my wife and I have been in and out of hospital.”
Nevertheless, Katongole kept his faith in God, hoping for a miracle.
One day, as Nansamba was breastfeeding Sebuuma in a taxi, a curious passenger next to her, wondered why she was breastfeeding the baby who was asleep.
She told the concerned stranger about her baby’s condition.
Katongole and Nansamba were referred to Kilimanjaro Christian Medical Centre in Tanzania, with the hope that their son would be operated upon and be able to gain his sight, but their woes were just beginning.
Doctors from the department of ophthalmology in Tanzania, told them that their baby was born with sockets lacking globs. They returned to Uganda, completely disillusioned. Still, Katongole has kept his faith.
He believes that perhaps God intends to use his son’s disability for His own glory. He quotes Romans 8:28: “All things work together for the good to those who are called according to His purpose.”
“Who knows what God intends to do with my son’s disability?” he says.
His face reveals a stressed man as he recounts the events that led to the death of his wife and how he almost lost his son to malaria.
“Upon returning to Mpumudde, my wife fell sick and died when our baby was just three years old,” he narrates.
Her death would spark off a tide of misfortune. Sebuuma also became gravely ill and almost died.
“I thought he was also gone, but by God’s grace, he survived,” he says.
But the real challenge came when all his family members turned their backs on him because of Sebuuma’s condition.
It was during the last funeral rites of his wife that he made passionate appeal to his relatives, particularly his sisters, to help him with the wellbeing of his child. But they all claimed they could not manage a disabled child.
From that time, he put everything on hold to take care of his son. He admits that initially, he thought he was in over his head.
“Before his mother died, I had no idea of how to nurse a baby, worse of all, a blind baby like my son,” Katongole says.
But with no one to turn to, he had to fit in Nansamba’s shoes.
“I could not disown my son, he is my flesh and blood,” he adds.
His son’s blindness has incapacitated his life as a peasant farmer because he has to look after his son round-the-clock.
Katongole has also suspended engagements in any relationship that is likely to cripple his relationship with his son. “I am ready to wait until my son joins a school for the visibly impaired,” he says.
He adds that he would appreciate any kind of support towards the wellbeing being of his blind child.
What the doctors say
Dr. Moses Kasadhakawo, an Ophthalmologist at Mulago Eye Clinic and Georgina Eye Clinic, says the boy was born without eye tissues, which leaves him to be irrevocably blind for the rest of his life. Statistics show that about 30 children in every 10,000 children are born with this condition.
Dr. Kasadhakawo says this kind of eye abnormality usually occurs during embryogenesis (when the embryo is forming).
While the condition can also be genetic, many people cannot know that they could be carrying the recessive gene until the baby is born.
Dr. Kasadhakawo says some medical complications that occur during trimester (early pregnancy) can cause such a rare condition. These include:
During embryogenesis, when the embryo is being formed and the eye sockets taking shape, a medical condition can happen that exposes the embryo to viral infection which in the end brings about abnormality in the course of the baby’s development; hence the child will be born without eye sockets.
Exposure to drugs during trimester stage. The mother could have taken some drugs, which bring about drug toxicity in her body. Cancer drugs have been widely singled out. The drugs end up affecting the baby, thus the rare condition.
Exposure to radiation can also bring out such a condition, especially during embryogenesis when the baby is just forming.
Dr Kasadhakawo, however, clarifies that it is hard to point out the likely cause of the boy’s problem. But the truth remains the condition might have sprung from the above mentioned causes.
He says although the boy’s condition is irrevocable, he can lead a normal productive life if equipped with life skills.
“He will never be able to see, but he can live a complete life,” Kasadhakawo remarked. Such children born with this condition can have all-round education.
The Mulago Eye Department and other projects like Blind But Able have rehabilitation programmes, where they help children born with such a condition to lead a normal productive life.
If you wish to help Katongole with his son, write to CSR@newvision.co.ug or call 0414337000