1 February 2009

Uganda: Cure Hospital - The Hope for Children With Disabilities

Kampala — MWAMBU, 30, remembers with pain the time her only daughter was sick. Her neighbours tormented them, claiming they were behind the witchcraft and poverty that had befallen Mukhuwa village, Mbale district, in eastern Uganda. "Nobody associated with us. My daughter was isolated.

She could not play with her peers. Even our own relatives abandoned us. We had to keep indoors," Mwambu says. Her daughter, Jacqueline, 11, was born with a neurological disorder commonly known as hydrocephalus.

It is a disorder characterised by abnormal accumulation of cerebral fluids in the brain. The fluid causes the brain cavities to enlarged, exerting pressure on the brain. If not treated by an operation the disorder can cause brain damage and eventual death.

With each passing day, Jacqueline's head kept swelling. As Mwambu continued praying for her child, God answered her prayers. A social worker from CURE Children's Hospital of Uganda in Mbale came to their rescue.

The hospital is one of the most advanced centres handling children's neurological (brain or spinal cord-related problems) disorders. Jacqueline was taken to the hospital and later an operation carried out on her head.

"It was an agonizing moment. The operation was successful and my daughter is leading a normal life," Mwambu adds with delight. Jacqueline is studying and hopes to become a doctor to help children with disabilities.

"Doctors saved my life and I want to dedicate my life to saving others. "I do not blame the neighbours. They tormented us out of ignorance. It is good they have realized their mistakes and some have apologised,"she says.

Mwambu, a widow, and her daughter, have now returned to their home and life is much better. "There is no more stigmatization and my daughter plays with her peers freely," she says. But Jacqueline owes everything to CURE Children's Hospital of Uganda, which was opened in 2000.

It is the only specialist paediatric neurosurgical and consultation referral centre in Uganda and the sub-Saharan Africa. Peter Sagabo, the public relations officer, says since the hospital opened, people suffering from intractable epilepsy have been successfully treated.

"People from as far as Venezuela and the Far East have been coming to this facility for consultations, medical assistance, training and surgery," he said. The hospital records show that over 900 surgeries are performed every year.

Children with spine deformities, congenital anomalies of the brain, skull, spine, encephalocele, spina bifida and spasticity, which were previously only treated outside the country have been able to get treatment at the hospital despite the fact that some of them could not afford the relatively minimal costs.

According to the executive director, Derek Johnson, surgery on hydrocephalus costs about $1,000 (sh2m) at the hospital. The same surgery would cost close to $30,000 (sh60m) in the US.

Johnson adds that there are about 30,000 children in Uganda with hydrocephalus, but due to stigma and poverty they have not sought treatment. He, however, says they normally carry out surgery on disabled children, regardless of their ability to meet the costs.

"With the goodwill of donors, we are able to serve all the children. We have also been able to give these disparaged children a voice by playing an intermediary role between them and the hostile members of the community.

This, we have done by demystifying the superstitions held in regard to most disabilities. "However, there are many children out there in need of surgical interventions. We need more partners."

Johnson says the hospital has become a focal training point in sub- Saharan Africa for neurosurgeons= seeking knowledge on the effective treatment of hydrocephalus and spina bifida.

"Under the International Programme to Advance the Treatment of Hydrocephalus, the hospital has attracted medical professionals from all over the world." There has been a lot of progress in research at the hospital.

"Research carried out on the management of hydrocephalus has been recognized internationally, with three papers published in the American Journal of Neurosurgery," Johnson adds.

The hospital has a 42- bed in-patient facility and a full diagnostic centre.

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