Forgotten Children: Families Cry Out as Uganda Lacks Lifesaving Drug for Spina Bifida & Hydrocephalus

By BM

For Concepta Katende Naluyima, life changed forever when she gave birth to her son, William Darlington Mayinja.

Born with Spina bifida and hydrocephalus, William’s condition has required multiple surgeries and continuous medical care—an exhausting and costly journey for the family.

“It is so challenging to have such a child,” Naluyima said. “At first, I didn’t even know such a condition existed. The doctors saw it on a scan when I was six months pregnant but didn’t tell me. They thought the child would die.”

Her son survived thanks to a timely intervention by doctors at CURE Children’s Hospital in Mbale, who performed urgent surgery on his spine and later operated on his brain to treat hydrocephalus.

But for Naluyima, survival came with lifelong responsibilities, frequent hospital visits, financial strain, and the constant fight to keep her child healthy.

“So far, he has had three major operations and several minor ones,” she said. “The head, the back, the legs everything has needed surgery. And these operations are very expensive.”

The Hidden Cost of Disability Care

While some operations are covered through partnerships with international organizations, many Ugandan families must shoulder enormous medical expenses.

Naluyima praised the International Federation for Spina Bifida and Hydrocephalus (IFSBH), based in Belgium, for supporting key surgeries but she says the ongoing care, medicines, and special equipment are often left to struggling parents.

One critical medicine oxybutynin, used to relax the bladder muscles in children who require catheterization is not available on Uganda’s essential drug list. “Without that drug, the children’s kidneys fail, and they die,” Naluyima warned. “It should be made accessible in Uganda.”

NGOs Filling the Gaps

Organizations like Katalemwa Cheshire Home for Rehabilitation Services, a Kampala-based NGO founded in 1970, have been vital in supporting children with disabilities, including spina bifida and hydrocephalus.

Olive Nabiryo, an occupational therapist and coordinator for the Spina Bifida and Hydrocephalus Interdisciplinary Program, said Katalemwa works with partners such as SHOW Uganda to provide physiotherapy, occupational therapy, and assistive devices like crutches, splints, and wheelchairs.

“Currently, we have over 6,000 children with spina bifida and hydrocephalus in the central region alone,” Nabiryo said. “But in a year, we are only able to reach about 1,000. Many families can’t afford transport to Kampala, so we conduct community outreach clinics in districts like Mubende, Hoima, and Kiboga.”

Nabiryo emphasized that the unavailability of oxybutynin is a major challenge. “When we run out, children have to stop school or work because they cannot control their bladders. Worse still, their kidneys can get damaged.”

Hospitals Overwhelmed

At CURE Children’s Hospital in Mbale, nurse coordinator Tonny Wambi described an alarming rise in cases. Between January and September this year alone, the hospital recorded 217 surgeries for spina bifida and over 1,200 for hydrocephalus.

“The numbers keep increasing,” Wambi said. “There is an urgent need for public awareness, more trained neurosurgeons, and government support for hospitals treating these conditions.”

Wambi echoed calls to include oxybutynin among Uganda’s essential medicines. “If it were readily available, these children could live better, longer lives,” he said.

A Call for Compassion and Inclusion

Beyond medical needs, Naluyima urged communities and fathers not to abandon families facing these challenges. “In most cases, men run away because they fear responsibility,” she said. “But even if the father disowns the child, the mother must stand firm. Communities should support us. We don’t plan to have such children, but they deserve to live meaningful lives.”

For thousands of Ugandan families like hers, every day is a battle for survival, dignity, and hope—a reminder that disability care is not just a medical issue, but a shared human responsibility.