Hydrocephalus families struggle with costly care, stig
Families caring for children with hydrocephalus face significant financial and social burdens long after initial surgeries are performed. Mothers like Joyce Nandawula struggle with expensive monthly medications, lost employment, and social stigma surrounding the condition.
Why it matters
It sheds light on the hidden ongoing healthcare costs and societal challenges faced by families dealing with chronic pediatric neurological conditions in developing regions.
________________ For families caring for children with hydrocephalus, getting surgery is only the beginning of a longer and often expensive journey. At Kitala Health Centre II in Entebbe, Wakiso district , parents, children living with hydrocephalus, health workers, Rotary members and community leaders gathered on September 24, 2026, for Hydrocephalus Awareness Day, held under the theme "We Are Together in This." The event began with a street march through Kitala aimed at challenging stigma and encouraging families to seek medical attention early. For mothers such as Joyce Nandawula, whose son underwent surgery for hydrocephalus at CURE Children's Hospital in Mbale, the procedure was supposed to mark the end of one of the most difficult chapters of their lives. Her son was barely three months old when she noticed something was wrong.
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