First hydrocephalus rehabilitation centre in eastern Uganda opened

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Children suffering from hydrocephalus in Manafwa district will no longer be abandoned at home following the unveiling of a facility where they will be rehabilitated.

The Hidden People project in Butiru sub-county in Manafwa district was unveiled last week by Jude Mike Mudoma, the Umukuuka (cultural leader) of the Bamasaba.

While unveiling the project in Manafwa, Jude Mike Mudoma said the facility will go a long way in helping children suffering from hydrocephalus in Manafwa and the neighbouring areas.

The Hidden People project located in Butiru sub-county in Manafwa district, was unveiled last week by Jude Mike Mudoma, the Umukuuka (cultural leader) of the Bamasaba. (Courtesy photo)

He said that at the moment, parents of children with hydrocephalus either leave their children at home or struggle to take them to the neighbouring district of Mbale for treatment.

“I am very grateful for this project because it will help our people. I encourage our people to build more facilities of this kind,” Mudoma said during the project launch.

He hailed Sonya Jane Elizabeth and her husband, Nathan Namatati, a couple living in the UK, for establishing the project.

Namatati was born in Butiru, but currently lives in the UK.

Elizabeth said the two decided to start the project after she gave birth and raised a child with hydrocephalus amidst challenges.

What is hydrocephalus?

Hydrocephalus is a medical condition that occurs when there is an abnormal accumulation of cerebrospinal fluid within the brain, leading to increased pressure and potential damage.

Founders speak

Namatati, a UK-based Ugandan, said because of the good health care in England, their son was diagnosed early and operated on when he was three months.

Jane Elizabeth Namatati and Nathan Namatati who started the project to help children with hydrocephalus in Manafwa district. (Courtesy photo)

"Following the experience I had with my child, I thought about the hardships that parents, especially in impoverished communities, face while taking care of such children," he said.

Namatati said children who suffer from hydrocephalus need care and love to make them grow and appreciate themselves.

“We also want to sensitise parents because some of them associate this condition with witchcraft," he said.

Namatati said he conceived the idea together with his wife in 2018.

He says many children in Manafwa are hidden by their parents and not allowed to socialise with others.

Elizabeth, a physiotherapist, said children who have undergone surgeries need to be cared for and taught how to read, write, interact and socialise with others.

 "When my son underwent an operation, it didn't mean that he had been cured completely. Sometimes, he could not talk well. He could cry alone or feel like being away from people. This means they need a special way of bringing them to the real world after undergoing surgery. They need physiotherapists to handle them according to their conditions," she said.

According to the Manafwa district health office, the district has a population of 4,312 people with disabilities.

 Dr Dennis Lukoye, a medical worker at Cure Children's Hospital in Mbale Hospital, hailed the couple for the project.

"We have been having surgeries at Cure Hospital, but not some of the care services that are going to be provided under this project. After surgeries, these children’s nervous system is affected, so they need special attention. This is a heaven-sent opportunity for children who will be recovering from surgeries. It is the first of its kind in the region," Dr Lukoye said.

He attributed the increasing cases of such conditions to mothers delivering from home and lack of antenatal care, where they are given folic acid to prevent the condition.

"Most of the mothers in the rural setting tend to avoid antenatal care in health facilities and also end up giving birth in gardens and homes, which exposes their children to the risk of suffering neurological disorders," he added.

Local leaders speak

Martin Mukhama, the Butiru LC3 chairperson, said the project has come at the right time when there is a growing number of children with hydrocephalus.

 He advised mothers to always go for antenatal care in health facilities in order to save their children from such complications.

A mother with her child battling with hydrocephalus attending the facility's opening in Manafwa district. (Courtesy photo)

Michael Tsekoko, the district community development Officer, said many children in the district develop such conditions due to ignorance.

Parents’ voices

Hellen Adayo, whose grandchild is suffering from the condition, said the condition affects not only the children, but also the caretakers, mostly parents and grandparents.

 She said her daughter abandoned a child who was suffering from hydrocephalus and went to get married to another man.

 Madina Mutonyi, another grandparent, said he also has two grandchildren who were incapacitated by hydrocephalus. She said she is optimistic that her grandchildren will be helped under the Hidden People project.

She said her daughter left her with the children and went to Saudi Arabia for greener pastures, but she never sends money to take care of them.