Health 28 April 2026 Daily Monitor (Uganda)
Mothers in Uganda Bear Heavy Burden of Rare Birth Defects Amid Treatment Struggles
Mothers across Uganda face heartbreak and financial strain raising children with rare conditions like encephalocele, spina bifida, and hydrocephalus, often discovering the issues only at birth despite antenatal care. Facilities like CURE Children’s Hospital in Mbale provide critical surgeries and hope after years of referrals and despair. Source: https://www.monitor.co.ug/uganda/news/national/when-birth-turns-to-crisis-mothers-carrying-weight-of-rare-conditions--5439280
In Lukaya Village, Kalungu District, Esther Ishimwe’s joy at childbirth turned to panic when her son Sam was born with encephalocele—a sac protruding from his skull containing brain tissue. Despite regular prenatal checkups, including an ultrasound, no one anticipated the issue. Midwives mistook the swelling for a prolapsed uterus, leading to an emergency C-section. Referrals piled up, with surgery costs hitting Shs2 million, nearly crushing the family until a tip led them to CURE Children’s Hospital Uganda in Mbale.
Teopista Alwenyi from Kampala faced similar shock with her daughter’s spina bifida, an open spinal defect risking paralysis and infections. Post-delivery diagnosis strained her marriage, with her husband rejecting the child, forcing her to name the baby after herself. Now at CURE, she receives wound care awaiting surgery, clinging to hopes of a brighter future.
Juliet Nanyonjo’s decade-long battle with her son John’s hydrocephalus and brain tumor left her abandoned by his father. Working odd jobs and later training in fashion design, she endured his worsening symptoms until a sponsored surgery at CURE—an endoscopic procedure draining brain fluid—brought dramatic improvement.
CURE Uganda, marking 25 years, handles around 2,000 pediatric neurosurgeries yearly for conditions like these, serving as a key referral center across East Africa. Medical Director Dr. Emmanuel Wegoye notes patients arrive after exhausting other options. Neurosurgeon Dr. Joel Kiryabwire stresses early intervention preserves brain function and mobility, while Health Ministry’s Dr. Rony R. Bahatungire calls for stronger partnerships to boost specialized care.
Recent expansions, including a new surgical theater, underscore CURE’s growing role in Uganda’s healthcare.
Source: Daily Monitor (Uganda)