Spotlight on Spina Bifida, Hydrocephalus in Uganda
"Like any mother, I prepared to have a healthy baby," Katende said. "When I woke up I asked for my baby, but he was hidden from me for two days. An attendant later told me that the baby had a wound on the back...a natural wound from God. I kept wondering what it could be, but no one, not the attendants, the nurses or the doctors could tell me what it was."
It wasn’t until a doctor from Mulago Hospital came to evaluate the child that Katende learned her newborn had Spina Bifida. A condition that occurs during the first month of pregnancy due to a lack of folic acid, Spina Bifida is a neural tube defect characterized by a “sac” on the baby’s back where one or more of the vertebrae did not form, leaving a gap.
Shortly after being diagnosed, Katende’s son, William Darlington Mayinja, was referred to CURE Children’s Hospital of Uganda (www.cure.org) where he received treatment for both Spina Bifida and Hydrocephalus, which he later developed.
Hydrocephalus is a condition in which cerebrospinal fluid accumulates in the brain, resulting in severe pain as well as significant brain damage. Infants who develop Hydrocephalus often present with excessive swelling of the head.
Katende shared the story of her son’s birth, ailments and recovery at an event hosted by five Ugandan NGO’s – CURE Children’s Hospital of Uganda, OURS, AVSI Gulu, Katalemwa Cheshire Home and IF Child Help – to commemorate the first annual World Spina Bifida and Hydrocephalus Day.
Femke Bannink Mbazzi, a Senior Program Advisor with AVSI (www.avsi.org) said the purpose of the event was to raise awareness about how Spina Bifida and Hydrocephalus can be prevented or treated. It was also an opportunity to advocate for the rights of people living with these impairments.
“The general attitude among people here is that a child with one of these conditions is going to die,” Mbazzi said. “But we believe that if we invest in these children they can thrive.”
The event, which took place at the Protea Hotel in Kampala, included testimonies and entertainment from children living with one or both conditions, presentations by specialists, and an exhibit entitled Unlocking their Potential.
It also served as the setting for several youths living with Spina Bifida and Hydrocephalus to present Uganda’s Deputy Speaker of Parliament, Jacob Oulanyah, with a petition imploring the government to pass or implement policies that would make schools more inclusive for children with these conditions.
Derek Johnson, executive director of CURE Children’s Hospital in Uganda, which has provided surgical care to over 4,500 children suffering with Hydrocephalus, said kids with Spina Bifida often aren’t allowed to attend school because of incontinence, which is a common result of the condition.
“It’s modern-day Leprosy,” Johnson said. “Often, even the children who are able to manage incontinence with self catheterization are turned away by schools.”
Oulanyah promised to ensure that the petition would be presented to parliament when it resumes on 30 October 2012. He also talked about the importance of both short and long-term interventions to help children currently affected and to spread awareness about prevention.
“The children have hope, but the society must plan for the future,” Oulanyah said.
According to IF Child Help (www.ifglobal.org) Spina Bifida is one of the most common congenital birth defects, affecting 1 in every 1,000 live births globally.
Johnson estimates that in Uganda, the statistic for Spina Bifida is double, affecting 2 in every 1,000 live births per year. Hydrocephalus affects 3 in every 1,000 live births per year in Uganda.
He said that 70 percent of these impairments could be prevented with increased folic acid intake.
During her speech, Katende urged policy makers to pass a law requiring foods to be fortified with folic acid to help prevent Spina Bifida.
“Ninety percent of pregnancies are not planned in Uganda, but you need to prepare the body [before conceiving] for three months by taking folic acid,” Katende said. “In South Africa foods are fortified. Why don’t we do it in Uganda?"
"The cost of prevention is much less than the cost of treatment,” she added.