House of Hope in Zanzibar: Charitable Aid Award from the Prandi Foundation, sponsored by Laboratorios Viñas

At the closing ceremony of the 34th National Congress of the Spanish Society of Outpatient and Primary Care Paediatrics (SEPEAP), held between 15 and 24 October in virtual format due to COVID-19, the announcement and presentation took place of the Prandi Foundation Award for the Best Charitable Aid Initiative. With a contribution of €10,000, donated by Laboratorios Viñas, this distinction aims to support the implementation of projects related to the socioeconomic development of a disadvantaged population in the paediatric field.

The winning project, in this third Charitable Aid Award ceremony, was House of Hope for children with hydrocephalus and spina bifida in Zanzibar (Tanzania), an initiative from the NED (Neurosurgery, Education and Development) Foundation, an organisation focused on promoting scientific, technical, cultural and training activities for health staff in the neurosciences, with a special focus on the Central and East Africa region.

The award, announced by Dr. Cristóbal Coronel, the secretary of SEPEAP, was presented by Dr. María Ángeles Learte, president of the Prandi Foundation, and Arantxa Sainz de los Terreros, representing Laboratorios Viñas. The distinction was received by Dr. José Piquer, a leading light in the field of neurosurgery, who has received a number of notable distinctions and awards in his career, as well as being the founder and medical coordinator of NED. After the congratulations and the corresponding words of thanks, an emotional video was shown about the hospital work carried out by the award-winning foundation in Africa.

If you want to go fast, walk alone; if you want to go far, go together

This African proverb contains the essence of the NED Foundation philosophy, which brings together the collaborative will of a group of people involved in the neurosciences and that, to date, has launched projects in Kenya, Uganda, Ethiopia, Rwanda and Tanzania, one of the low-income countries where hydrocephalus and spina bifida in children are two of the most challenging ethical and health problems facing international health development. In this situation three circumstances converge:

Its frequency. The most optimistic estimates indicate that 200,000 newborns annually will develop hydrocephalus or be born with a neural tube defect in east, central and southern Africa.

The high potential and acute severity, condition the prognosis regarding the child’s functioning and survival. Hydrocephalus is a disease characterised by an excess of cerebrospinal fluid (CSF) inside the brain ventricles. This accumulation of fluid increases the pressure inside the intracranial cavity and compresses the brain, sometimes irreversibly injuring it if not solved early. Open spina bifida is a defect in the closure of the spinal neural tube, exposing its contents: the spinal cord and nerve roots. Its morbidity is very high and it affects quality of life in all its stages.

Its continued scientific importance today is a stimulus to designing global strategies that will promote universal access to basic surgical services. The development of subspecialities, such as neurosurgery, is one of the most important current challenges to achieving essential surgical health care. A few years ago, the WHO classified African neurosurgical development, including Tanzania, in group 3, with those countries that had a ratio of 1 neurosurgeon for every 9,268,800 people.

Outpatient paediatric medicine, a pressing need

In Zanzibar (Tanzania), one of the most impoverished areas in the world, there is a very high incidence of these pathologies. Immediate surgery and careful management greatly reduce the risks, but neither were previously available to the majority of the population.

In 2014, the NED Foundation started a medical training and care project, with the construction and commissioning of a neurosurgical centre called the “Mmazi Mmoja NED Institute”, providing it with human and material resources through donations.

This project has now carried out 1,400 free surgical operations, most of them performed on children with hydrocephalus and neural tube closure defect, achieving low infection and mortality rates.

The NED Foundation has now taken a step further, trying to cover follow-up treatment for patients, offering them the necessary resources for their treatment through the support of outpatient paediatric medicine and by implementing disease prevention methods in educating future mothers on care during pregnancy and the importance of folic acid intake.

This work is carried out in the "Houses of Hope", which serve as shelters and offer training to parents and caregivers of children with hydrocephalus and myelomeningocele. Their aim is to reduce hospital stays and practice outpatient rehabilitative treatment allowing children to get the best recovery and quality of life possible through educational activity aimed at their relatives so they can help the children to develop properly in each stage of their lives, offering greater survival for children and adults with severe disabilities who require complex care and opportunities.

A project made reality

Some centres already exist in various regions of East Africa, but the current objective of the NED Foundation is to develop a “House of Hope” in Zanzibar.

The goals established to make it happen are:

- Find a centre that is close to the “NED Institute” to turn it into the Zanzibar “House of Hope”.

- Provide the population with access to social and health resources offered both at the “NED Institute” and at the Zanzibar “House of Hope”.

- Create a social health network in Zanzibar dedicated to the care of children with hydrocephalus and spina bifida.

- Achieve a favourable impact on the evolution of paediatric patients after hospital discharge and reduce complications from infection.

- Reduce the number of deaths due to complications or lack of care after hospital discharge.

- Educate parents of affected children in the proper daily care their children require, as well as training them in the technique of clean intermittent urinary catheterisation.

- Reduce the stress level of the parents, improve the quality of life of the children and achieve the social integration of both.

- Inform future mothers about the importance of taking folic acid before pregnancy and during the first months of pregnancy.

The basic needs that need to be covered include:

- Human resources, which include medical and nursing care, rehabilitative, psychological and social care, as well as administration, cleaning and maintenance personnel.

- Logistical resources, such as the provision of an outpatient medical consultation office, a room with 5 paediatric beds, a training room for parents and a small rehabilitation gym.

- Material resources: for the maintenance and operation of the centre, as well as medical supplies, which include intermittent urinary catheters, antiseptics, gauze and folic acid capsules.