Parents of children with birth defects ask for help

Parents of children living with hydrocephalus and spina bifida in Bugisu Sub-region have asked the government for special financial support during this period of economic hardship worsened by the coronavirus-induced restrictions.

Spina bifida is a birth defect that affects the brain. It occurs when bones of the back and spinal cord do not form properly within the first four weeks of pregnancy.

Hydrocephalus, on the other hand is commonly understood as ‘water on the brain’, which is a build-up of fluid in the cavities deep in the brain. This condition is most common in infants and older persons.

Ms Joweri Hassan Namataka, a resident of Makenya Town Council in Manafwa District, said she is struggling with her son, Buke Nambafu, who is living with hydrocephalus, after she lost her job during the first lockdown.

“I now don’t have any source of income and my relatives don’t want to associate with me because they think my son is a sign of a bad omen,” Ms Namataka said.
 Ms Namataka said her son, now aged 12 lacks a wheelchair, which could help to ease his movement.

Ms Deborah Mutonyi, a resident of Bukadala Sub-county in Manafwa District, who was divorced by her husband after she gave birth to a child with spina bifida, said the government should protect the rights of children living  with disabilities.

“The community violates the rights of these children and access to education is not granted. Something needs to be done,” she said.

Ms Mutonyi said the government should arrest and prosecute men who abandon their wives because of giving birth to children with hydrocephalus and spina bifida.

Ms Sarah Nabukwasi, a mother of a 12-year-old boy with spina bifida in Bumwawule Village, Bukyabo Sub-county in Sironko District, said such children are expensive to take care of.

“They are sickly and they need pampers every time; that is why we appeal to the government to support the hospital with funds to conduct surgeries,” Ms Nambozo said.

Mr Patrick Mayu, a resident of Bumbo Town Council in Namisindwa District, who is also the coordinator of parents with children affected by birth defects in Bugisu Sub-region, said the local governments should ensure that health centres and schools have standardised ramps to ease access. “Many of the government aided schools still lack standardised ramps leading to the classrooms, dormitories, administration blocks, among other facilities,” she said.

Mr Tony Wambi, the spina bifida nurse coordinator at Cure Children’s Hospital, said the government should support parents financially so that their children can undergo surgery.

“The government should make a special contribution towards this noble cause to enable the children to get surgeries and live better lives,” he said.
 Mr Wambi explained that each surgery costs between Shs5 and Shs7 million, which cannot be afforded by most  the parents.

Prevalence
Research, which was conducted by Cure Hospital in Mbale and the National Institutes of Health organisation, indicates that between 3,600 and 5,400 children in Uganda are born with or develop the condition of hydrocephalus every year. Health workers say about 60 percent of hydrocephalus cases in Africa are due to infections like germs. Others are caused as a result of head injuries and tumours, among others.