Spina Bifida. Hydrocephalus . Information . Networking . Equality - SHINE

Life saving surgery for babies and children with hydrocephalus in Uganda

ASBAH, working in partnership with the International Federation for Spina Bifida and Hydrocephalus (IF), needs to provide life saving surgery to treat hydrocephalus for babies and infants at the national referral hospital in Mbale, Uganda. The cost of each operation is £400. The hospital performs over 1,000 surgeries a year to treat hydrocephalus and spina bifida.

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  • Health/WellbeingHealth/Wellbeing

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  • Children (3-18)Children (3-18)

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In developing countries, many children with spina bifida and hydrocephalus can and do survive, but in conditions which for the individual and family vary from appalling to inhuman. Without treatment hydrocephalus can be fatal. Although children often develop hydrocephalus by itself, about 87% of people with spina bifida also develop hydrocephalus. Despite the lack of systematic national data on spina bifida and hydrocephalus, the evidence we have gathered since working in Uganda suggests a higher incidence of spina bifida than the global average probably caused by the high incidence of displacement and overall low level of food security. Other common causes of hydrocephalus include malaria and meningitis infections in infants. Both spina bifida and the brain damage caused by hydrocephalus require life long care; surgical intervention is only the first step. However, with proper support, many children and adults with SB/H learn to overcome problems, gain confidence and go on to live full and independent lives. Many children with hydrocephalus in the North have a shunt put in place that moves excess fluid from the brain to other safe areas of the body. If the shunt fails it can be fatal without immediate treatment, around 50% of shunts fail within three years of placement. In the South where urgent access to neurosurgical care is not available, shunts are not the first option. Instead the preferred option is to perform a ETV/CPC – a combined endoscopic third ventriculostomy and choroid plexus cauterisation, a procedure that involves making a opening in a brain ventricle to allow the fluid to escape whilst also reducing the amount of CSF that is produced by the brain. Over the last few years, with IF’s help, the CURE Children’s Hospital in Mbale, Uganda has become the main referral hospital for spina bifida and hydrocephalus treatment. The focus of the doctors at the hospital has been on the treatment and research of hydrocephalus. The hospital is the national centre of excellence on the alternative to shunt surgery for hydrocephalus – ETV (using an endoscope to make a natural bypass for the excess fluid in the brain). The hospital staff also work closely with Katalemwa Cheshire Homes hospital in Kampala to provide post-operative rehabilitation for the children who have been treated. The hospital performs over 1,000 surgeries a year to treat hydrocephalus and spina bifida and runs 30 satellite clinics for follow up appointments. The surgeons also run a training programme on the ETV technique for neurosurgeons from other countries so that skills are shared with other African and Asian surgeons. ETV surgery is a high-skilled, low cost way of relieving the pressure on the brain, helping to reduce the severity of disability and increasing the chances of the child with hydrocephalus leading an independent life. ASBAH and IF’s partnership is to enable people from Uganda with spina bifida and hydrocephalus to improve their quality of life; survival is not enough. ASBAH wants to fund 50 surgeries at a cost of £20,000.

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