Neema Umutoni from Jabana sector in Gasabo District has a nine-year-old child suffering from spina bifida, a birth defect in which a developing baby’s spinal cord fails to grow properly.

"I went to the hospital for delivery and it went well, but after a few hours, I was told that my baby has spina bifida,” she says. 

Umutoni, and some other mothers with children suffering from the defect of the spine, narrate the ordeal of their children, including a neurogenic bladder—children born with spina bifida are almost always found to have this. This is because the nerves in the spinal cord that control the bladder did not form properly. This means that the bladder will have trouble storing urine in the bladder, emptying the bladder, or both.

"They have no control, and when they want to go for a long or short call, it all comes flowing at any time,” she says.

Many people with spina bifida are incontinent, that is, they are unable to control their bowel and bladder discharge resulting in involuntary loss of urine (urinary incontinence) or faeces (faecal incontinence). 

 "So, when he went to school, they would call me now and then as he was giving them a hard time and eventually, I got him out of school. If I had the means, I would enrol him in a special school,” Umutoni says. 

Immaculee Umuganwa, another parent with a child suffering from spina bifida has a similar story.

"When the incontinence started, I thought it was because she was still young. But as she grew, it didn’t stop, so I realised the issue,” she recalls.

"You can’t progress with this kind of issue. You can’t leave them with anyone and go to work because they can’t handle it, and my husband immediately abandoned me after giving birth to a child with spina bifida”, she adds.

Doctor Laurence Ntawunga, the head of Rwanda Spina Bifida and Hydrocephalus Relief, an organisation working with children affected with the problem, says the families with these children need special support to raise their standards of living.

"A family with a child who suffers from this problem no longer has time to work and develop their standards of living, because the members are concerned with the condition of their child, seeking treatment and taking care of them. These kids even need pampers because their urinary tracts are uncontrollable and not all families can afford them,” he says.

Moreover, he adds, the parent cannot do anything else because the child needs to be followed up on 24 hours a day and seven days a week,” he says.

Health experts say that 80 per cent of children are born with difficulty of the spine because there was a deficiency of folic acid even before conception. 

Doctor Severin Muneza, a neurosurgeon at the University Teaching Hospital of Kigali (CHUK), indicates that spina bifida is a result of the lack of closure of the spine.

He adds that avoiding this problem begins even before conception, urging mothers to look into it. 

"When the lower body part is the one concerned, it affects the legs and the anal and urinary tracts do not function properly because the nerves that stimulate them are damaged. Hence, women must make a habit of taking folic acid and other vitamins before conception,” he says. 

According to Muneza, folic acid can be found in peas, citrus fruits like oranges, lemons and beans, among other foods. 

This, he adds, can prevent the disease and reduce its risk by more than 70 per cent.

Medical experts say spina bifida is a common problem in nine out of one thousand babies born worldwide. CHUK doctors report that they accommodate three children with the condition in a week.

In Rwanda, spina bifida patients are monitored at four hospitals countrywide, which are the Kanombe Military Hospital, CHUK, King Faisal and Gikonko Health Center in Southern Province.

Urine and kidney problems

In an article ‘Long term problems associated with Spina Bifida’ published by Southampton’s Children’s Hospital, it says that almost all patients with spina bifida will require lifelong antibiotics to prevent infection. Approximately 70% of all spina bifida patients will have to have some form of drug therapy later in life to try to control their bladder over-activity, and approximately 70% will have to practice clean intermittent catheterisation on a lifelong basis.

About 30% of spina bifida patients will not respond well to this treatment, continuing to wet or develop pressure effects on their kidneys. These children need major surgery to be carried at some stage during later childhood. This is usually between 7 and 10 years of age.

This surgery involves operations on the bladder. Often, the bladder is made larger so that it can hold more urine. To make passing a catheter into the bladder easier and to allow the children to catheterise themselves, the child’s appendix may be connected to the bladder and the other end brought out onto the skin. A catheter can then be passed through this several times each day to keep the child dry, the article mentions.