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Phoebe Mutoni, Board Chairperson of the Spina Bifida and Hydrocephalus Association of Uganda (SHAU), noted the immense financial burden placed on families who care for children with these conditions.
“Many parents struggle to afford diapers, which are crucial for their children’s care, on top of other expenses such as medical treatments and assistive devices,” she said. Mutoni also urged the government to provide free catheters at public hospitals, another essential medical supply for children with these conditions.
Mutoni, who has personally raised a child with spina bifida, spoke passionately about the challenges faced by parents, many of whom are abandoned by their spouses due to the stigma surrounding these conditions.
“We teach families how to manage these conditions, but the financial burden remains high. Removing taxes on diapers would greatly relieve parents,” she added.
What is spina bifida?
Spina bifida is a birth defect where the spine and spinal cord don't form properly, leading to potential mobility and neurological issues. Hydrocephalus on the other hand is a condition where excess cerebrospinal fluid builds up in the brain, causing pressure and potential brain damage. Both conditions can significantly affect a child's development but are manageable with medical intervention.
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Medical Experts Emphasise Prevention and Treatment
During the event, Dr Peter Ssenyonga, a neurosurgeon at Mulago Hospital, discussed the preventable nature of many cases of hydrocephalus. He noted that a big number of children develop the condition due to infections, which could be avoided through better healthcare practices. “The biggest number of children that develop hydrocephalus are secondary to infection, and this is preventable,” he explained.
Ssenyonga also addressed the causes of spina bifida, attributing many cases to a lack of folic acid in mothers during early pregnancy.
He called for more advocacy and awareness to ensure that women of childbearing age have access to folic acid supplements, which can prevent the condition.
“The incidence of spina bifida in Uganda is about 35 per 1,000 live births, which is significant. We need to focus on prevention, but the good news is that these conditions can be treated,” he said.
Support Services Expand at Mulago Hospital
Dr Rose Byanyima, Executive Director of Mulago Hospital, pointed out that the hospital has made strides in treating children with spina bifida and hydrocephalus through its dedicated paediatric neurosurgical outpatient unit. She emphasised the importance of reducing stigma and noted that Mulago now offers physiotherapy, educational therapy, and speech and language services to help children with these conditions lead better lives.
“Parents no longer abandon their children as often as they used to, thanks to increased awareness and the support we provide,” Byanyima said. The hospital’s specialised clinics are helping children live healthier, more fulfilling lives, but more government support is needed to reduce the financial burden on families.