Parents of children with spine defects decry stigma

Parents of children with  spina bifida, defects of the spine, have complained about stigma in their communities.  
Some of the parents in Mbarara City told Daily Monitor that communities are hostile  towards children with spina bifida and their parents. 

Spina bifida is a medical condition that occurs when the spine and spinal cord don’t form properly, and is caused by a lack of enough folic acid during pregnancy.
 Some of the conditions of children with spina bifida include paralysis, faecal incontinence, hydrocephalus (head enlargement) and bowel and bladder problems. 

Mr Robert Kyaapa, a single father from Kabale, in Masha Sub-county, Isingiro District, said his wife deserted him upon the realisation that their now seven–year–old daughter, had spina bifida.
“In 2017, we gave birth to this girl, but was diagnosed with spina bifida condition. She was operated on, but this resulted in a swelling on the head. After months spent at Mbarara Regional Referral Hospital, we were then referred to Mbale Cure Hospital where we stayed for almost a month. My wife abandoned me at the hospital,’’ he explained.

Mr Kyaapa added: “When we returned home, she threw our baby in the toilet and ran away with the older child, but luckily, we managed to rescue her when she was still alive.”

At the time,  Mr Kyaapa said he did not have a stable source of income and resorted to begging on streets to treat his daughter.
 “As a man and a single parent, I find it difficult because I now have to be on these streets begging to survive to get rent, food and other necessities. The hospital has asked me to get a wheelchair for her but I cannot afford it,’’ he said

Ms Annet Nasasira from Ruti in Mbarara City South Division, Mbarara City, said she was also raising her 5-year-old daughter as a single mother. She fled her marital home because of being battered by her husband after the child was born with a spina bifida condition.
 “I gave birth to this child when my husband and I were in good terms. But after he realised that our daughter was sick, he ran away from responsibility. I faced domestic violence, he would occasionally beat me, tell me that I brought a curse to the family for producing such a baby, and wanted me to quit his home,” she said.

Ms Nasasira claimed her husband’s family also isolated her.
“I quit my marriage to stay alone, but society still marginalised me and my child. People would mock us and ridicule my child,” she added.   
Dr Allon Ndyowawe, the coordinator for the spina bifida and hydrocephalus interdisciplinary programme in western Uganda, said stigma remains a big challenge when handling this condition.

“One of the challenges we encounter when handling children with spina bifida is stigma, these children are neglected and abandoned by their families and parents. Apart from treating children with this condition we do capacity building to parents, caregivers, local leaders and Village health teams on how to handle, love these children,” Dr Ndyowawe, also working at Ruharo Mission Hospital in Mbarara City, said.

He added that some parents consider such children as a curse. 
“We work with local authorities and police to arrest parents who isolate their children suffering this condition,” Dr Ndyowawe added. 
Mr Henry Mushabe, the Mbarara City probation officer, said his office registers several cases of children living with various disabilities who are always abandoned by their parents.  

“We have registered some cases where parents abandon their children with disabilities but I don’t have the statistics now. But poverty is one of the causes, especially men running away from their responsibilities,’’ he said.
Dr Ndyowawe said on average, Ruharo Mission Hospital receives about 10 cases of children with spina bifida condition every month, up from less than five cases monthly four years ago due to low awareness.

He said the surgery for spina bifida costs between Shs 4.5 million and Shs 6 million and urged women of childbearing age (15 years and 50 years) to take folic acid supplements during pregnancy.