Driving positive change for children with spina bifida and related disabilities in Nigeria

Kirsty Scott

15 July 2021

This is an article from the CSC Development Theme: Access, inclusion and opportunity

Festus Fajemilo Foundation (FFF) started in 2006 born out of a passionate drive to save my first child’s life, whose name is Festus and who was diagnosed with hydrocephalus at the age of two months. The situation threw myself and my wife into a state of confusion as information was lacking [and] access to treatment was difficult. [T]he experiences of the first two years of his life gave birth to a sort of initiative support group that we started with some other families who also have children with a similar condition.

Afolabi Fajemilo

The support group Commonwealth Alumnus Afolabi Julius Fajemilo and his wife set-up in 2006 has transformed into the Festus Fajemilo Foundation (FFF),  a disability focused non-governmental organisation which aims to improve the quality of life for persons with spina bifida and hydrocephalus and related disabilities in Nigeria. As the co-founder and Executive Director of FFF, Afolabi is driving positive change for families and children with spina bifida through international partnerships and improved access to healthcare.

In this article, Afolabi shares how he developed the programmes and priorities driving forward the FFF’s work, and how his Commonwealth Professional Fellowship experience in 2014 contributed to the development and expansion of the organisation.

Spina bifida is a congenital condition developed during pregnancy and is present at birth. Spina bifida literally means ‘split spine’ and occurs when the neural tube, the structure in the embryo that becomes the brain and spinal cord, fails to develop correctly. The vertebrae fail to form complete rings around the affected part of the spinal cord, leaving a gap most commonly at waist level.

Hydrocephalus is one of the most associated conditions of spina bifida and is also referred to as ‘water on the brain’. Hydrocephalus occurs when there is an imbalance between the amount of cerebral spinal fluid (CSF) produced by the brain and the rate at which it is absorbed into the bloodstream. A build-up of CSF increases pressure on the brain and can compress it.

There are different types of spina bifida and hydrocephalus which can be treated and managed in different ways. Currently, it is unknown why spina bifida develops and research is ongoing.

The first two years of the foundation: building partnerships and programmes

The first two years of the foundation were an intensive period for Afolabi as there was little to no information available about spina bifida and hydrocephalus in Nigeria to inform its work and support affected families.

Building partnerships therefore was integral to understanding the information and support the foundation would need to provide families and the programmes that could be offered, based on existing models.

“[W]e strung partnership into our work because we believe that no individual organisation can do everything… we see partnership as critical to achieving our overall goals, so we began to network and establish partnerships relevant to local and international organisations.”

One of the first international partnerships was with the Liliane Foundation in the Netherlands, which supported the development of the FFF’s child empowerment programme in 2009 through the strategic partner organisation, Daughters of Charity of St Vincent De Paul Nigeria. This programme operates a twin track delivery approach: child development and creating an enabling environment for children with spina bifida.

Through the child development track, the foundation provides support to children with spina bifida related disabilities in the areas of surgery, paramedical therapy, assistive devices, and medication. The enabling environment track, meanwhile, advocates for disability rights and cements the foundation’s social approach to disability.

“[W]e operate on [a] social approach to disability [through] which we believe that disability is  a result of the attitude of society and the environmental barriers. So, our enabling environment track focuses on advocacy to remove various barriers be it institution[al], environmental, or attitudinal barriers.”

The foundation’s international partnership network continued to grow thereafter, becoming the first international community member of Hydrocephalus Association in the United States in 2012 and a member of the International Federation for Spina Bifida and Hydrocephalus in 2013.

Broadening the foundation’s scope through the Commonwealth Professional Fellowship

Through research and partnerships, Afolabi realised that to achieve its goals the foundation would need to broaden its scope beyond spina bifida and hydrocephalus and provide information and support on related disabilities and challenges faced by those with spina bifida.

The effects of spina bifida vary depending on the type, location of spinal lesions, and the impact of treatment and surgery. Those with spina bifida can experience reduced mobility, bladder and bowel complications, and impacts on learning and behavioural development.

In 2014, Afolabi partnered with the UK’s Spina Bifida Hydrocephalus Information Networking Equality (Shine). It was here that his Professional Fellowship journey began. Afolabi, his wife Adewumi, and FFF’s Programme Manager Badejoko Fabamise were awarded Commonwealth Professional Fellowships to visit Shine in the UK and learn more about how to support families and children with disabilities related to spina bifida.

Group photo showing meeting between continence nurses

Brenda and Kate, Specialist Continence Nurses from Wales, meeting with the Continence Coordination Team of Lagos University Teaching Hospital

A key area of focus during the Fellowship was continence management. Incontinence is a major challenge for children born with spina bifida. Left unmanaged, it can lead to infection and serious health complications, including renal failure. At the time of Afolabi’s Fellowship, there were no public health facilities in Nigeria offering a comprehensive continence programme. This changed after Afolabi was connected to the Welsh charity, Wales for Africa Hub, during the Fellowship. Through Welsh-based organisations, the charity provides medical care, education, training, and social welfare to communities in Africa. On learning about their work, Shine Cymru applied for funding on behalf of FFF – and were successful. In 2016, the funding enabled Shine to send a specialist nurse to assess the provision of continence management in Nigeria, identify gaps in care delivery, and propose possible interventions.

The scoping visit identified previous attempts by a local paediatrician in Nigeria to introduce catheterisation amongst a small number of patients with urological symptoms, but this failed as it proved impossible to sustain this care alongside existing clinical commitments and without trained nursing staff. 80% of the children seen by the specialist nurse were identified as having high bladder pressure and unsafe bladders. Left undiagnosed and untreated, this would result in kidney failure and ultimately, reduced life expectancy. At that time, some of the children were already showing signs of renal failure.

Launching the continence management programme post-Fellowship

Photo of continence training

Shine’s Specialist Continence Nurse conducting training for nurses from the Public Teaching Hospital

Following the Fellowship and in response to the results of the scoping visit, FFF launched a continence management programme in 2016, which included the establishment of a continence clinic at their offices in Lagos. Through the programme, the clinic and two teaching hospitals are now able to provide support to 100 children and adults with spina bifida. The clinic also serves as a back-up facility for public hospitals during industrial strike action or when other disruptions prevent patients from accessing care at hospitals, such as during the COVID-19 lockdowns.

As part of the programme, in 2017 FFF and Shine were awarded further funding from Wales for Africa Hub. This enabled two continence nurses to deliver a two-day training workshop for nurses from four teaching hospitals in Nigeria on continence management care. 10 nurses were trained during the workshop alongside 15 families working with FFF.

Post training, the workshop participants meet quarterly to share knowledge, challenges, and promote best practice amongst healthcare professionals. As a result of the training, two of the hospitals immediately mainstreamed continence care into their regular hospital services, thereby increasing access for patients and cascading knowledge and practice amongst nurses. In 2021, following ongoing advocacy, the remaining two hospitals also came on board with the programme to receive support from FFF and Shine to mainstream continence management.

These improvements to continence management in Nigeria has had a significant impact on those with spina bifida. For example, the programme has enabled children with an overactive bladder to access medication to relieve bladder pressure, reducing the need to use diapers which can be costly and odorous. Incontinence can also lead to infections which may result in children needing to be admitted to hospital, taking them away from school and their peers. Improved management and access to support has reduced the frequency of these infections.

“[T]here has been a good outcome in the sense that it has improved the social life of these children. So many of them are able to go to school regularly now unlike before, because when they have frequent infections, that takes them to hospital and that disturbs their education. But with [the] continence programme it has reduced costs on parents on diaper[s]. It has promoted, improved the self-esteem of children, boost[ed] their confidence, help[ed] them to attend school regularly…”

With continued support from Shine and through partnerships with the four teaching hospitals, Afolabi is currently looking at the long-term development and sustainability of the continence management programme, as well as widening access to medication and resources. By the end of 2022, Afolabi aims to reach at least 300 children and adults with spina bifida.

Empowering children with spina bifida

Group photo showing home and school visits to some of FFF's children

Brenda, Kate and the FFF team conducting home and school visits to some of FFF’s children in October 2017

Working with parents of children with spina bifida is another important area of the foundation’s work. Afolabi is keen to show parents that children can manage the condition independently. To achieve this, Afolabi took inspiration from Shine’s youth programme.

Adapting the programme, in 2018 FFF delivered a residential skills training workshop for 13 young people with spina bifida and hydrocephalus aged between 13 and 18. For many children, the residential was the first time they would manage their condition by themselves and parents were encouraged to ensure they were prepared for this experience. As part of the training, children were paired using a buddy system to support and learn from each other to complete routines such as bowel washout and taking medication.

The training achieved its aims of empowering children to manage their condition and showing parents that they could do this. Afolabi is pleased to share that following the residential, two children are now living away from home to attend school.

“And it was like, wow, so they could do this thing by themselves. So, that exposed them. That prepared them. That empowered them. And two of them now got admission in the last two years to complete further and higher education. They are in [an] institution now and they are in school hostel and they [are] doing well. They are coping very well.”

Battling stigmas around disability in Nigeria

As well as the networks Afolabi established during the Fellowship, working with Shine in the UK provided opportunities to understand how the organisation operates and to meet people with spina bifida and learn about their experiences.

“Prior to [the Fellowship], we never believed someone born with spina bifida could attain maybe age 30 and above, but surprisingly we met a woman who was 68 years old during our Fellowship programme. That was like, wow, there is hope. So, if timely interventions are provided and with [an] enabling environment, then children born with this condition can thrive in any environment they find themselves.”

Stigma around disability in Nigeria presents a huge challenge to the foundation in raising awareness of spina bifida and empowering families and children. Afolabi recalls an experience in the early days of the foundation when his and five other families were asked to appear on TV to talk about spina bifida. In the end, his was the only family that went on air. After the programme, he reached out to the others to find out why they had not taken the opportunity and how the foundation could provide support.

“Virtually all of them came up with the same statement that they can just imagine that people in their community will see them on TV sets and they will be making jest of them. That that will increase stigmatisation of their child… But over the years, we continued to educate families, build their capacity, letting them know that there are local and international legal frameworks that give rights to their child. That their child will have [a] right to education, right to health, right to social protection.”

Now, because of the foundation’s work, Afolabi finds that families want to share their experiences and is pleased to report he is often overwhelmed by requests to raise awareness of spina bifida through local and national media channels.

Developing the first five-year strategic plan

Looking ahead to the next five years, Afolabi used the insights he gained from Shine’s organisational management to develop FFF’s first five-year strategic plan. This sets out clear goals and plans programmes and resources effectively. It will also enable them to monitor the work and reach of the foundation.

Partnerships will continue to play a key role in the development of FFF and Afolabi credits Shine and his Commonwealth Professional Fellowship in its success to date.

“I continuously seek for knowledge to develop myself, and when the Commonwealth Fellowship programme came, it was an opportunity to widen exposure to individuals, organisations. It has never been the same. It has been a shift from who I was setting up of the foundation before the Fellowship programme, and after the Fellowship programme.”

Afolabi Julius Fajemilo is a 2014 Commonwealth Professional Fellow from Nigeria. He completed his Professional Fellowship with Shine UK.