Participants during the SBH awareness walk/BOURNAVENTURE M'MAITSI.
The world observed the Spina Bifida and Hydrocephalus (SBH) celebrations on October 25, 2025.
Kitale Town came alive with colours, songs, and dances as it joined the rest of the world in the celebrations.
Under the theme Accelerate Action for SBH, people living with the two conditions, their families, medical professionals, and well-wishers filled the streets of Kitale Town, walking side by side to raise awareness.
BethanyKids, in partnership with Trans Nzoia County, brought together several organisations, parents, children, and advocates to mark the day.
The organisations included NeuroKids Kenya, Spina Bifida and Hydrocephalus Association of Kenya – Trans Nzoia, Clubfoot Care for Kenya, Child Health International, Imani IV, the Anglican Church of Kenya – Diocese of Kitale, Kenya Red Cross, Madison Group, and the Disability Network.
Globally, according to the World Health Organisation (WHO), neural tube defects account for approximately 300,000 new cases annually, with about 40,000 of these in Sub-Saharan Africa.
The day began with the distribution of 60 adult wheelchairs as assistive devices to enhance their mobility and independence.
Afterwards, all the stakeholders took a public walk across Kitale Town with the aim to promote understanding, raise awareness, and advocating for better care and inclusion for individuals living with SBH.
The Salvation Army band played instrumental tunes as participants carried banners drawing public attention. Residents stopped to watch and listen while others joined in, creating a growing crowd.
David Ng’ang’a, Country Director of BethanyKids Kenya, expressed gratitude to the partners who made the Kitale celebration a success, saying that the partnership is what amplifies their impact.
“Together, we can ensure that no child is left behind because of a treatable condition. Every time we come together like this, we remind families that they are not alone,” Ng’ang’a said.
Organisations that came together for change
- BethanyKids Kenya
It is a Christian non-profit organisation based at AIC Kijabe Hospital, rooted in medical excellence for children living with disabilities and surgical needs such as SBH, with the mission to ensure that no child is denied medical care because of cost, distance, or lack of knowledge.
BethanyKids provides surgical care, where they provide operations for children with conditions such as Spina Bifida, Hydrocephalus, and other congenital disorders. The surgeries are mainly carried out at AIC Kijabe Hospital, where BethanyKids runs a fully equipped paediatric surgical unit.
The organisation also trains paediatric surgeons to fill the existing gap in specialised medical care in the country. Also, to ensure that children continue to thrive after surgery, BethanyKids places strong emphasis on rehabilitation and follow-up care.
Additionally, the organisation runs an assistive technology programme that provides customised wheelchairs following World Health Organisation guidelines and supports physiotherapy for children recovering from surgery.
“Addressing SBH goes beyond surgery; we are not just treating conditions as we believe that every child deserves a chance at life without stigma and a chance to stand, to learn, and to dream without limits,” Ng’ang’a said.
Ng’ang’a explained that the biggest challenge in Kenya is not access to surgery, but the lack of consistent follow-up. “Many hospitals perform surgery for SBH, but the follow-up care is missing,” he said.
“Therefore, we follow up close to 4,000 people a year, yet our database has about 8,000. We can’t reach everyone, and that gap means some children develop complications that could have been prevented.”
Beyond medical care, Bethany Kids runs mobile clinics to reach families in remote areas.
The mobile teams travel across different regions several times a year, providing check-ups, rehabilitation, and counselling.
However, Ng’ang’a noted that limited resources have forced the organisation to scale back.
“We have had to reduce the number of clinics we do because of funding constraints,” he said.
“This year, some regions have only been visited three times instead of six, and that increases the risk of losing people to follow-up.”
BethanyKids also champions awareness and prevention.
During the annual World SBH Day, the organisation educates communities about the causes and prevention of neural-tube defects.
“Spina Bifida often results from a lack of folate in a mother’s diet,” Ng’ang’a said.
“We are advocating that all women of child-bearing age take folate supplements, because by the time you realise you’re pregnant, it might already be too late.”
Ng’ang’a emphasised the importance of building a health system that fully includes people with disabilities, urging the healthcare system to stop discriminating against people with SBH and other diseases,” he said.
- NeuroKids Kenya
Among Bethany Kids’ key partners is NeuroKids Kenya, an organisation that focuses on providing innovative treatment and long-term support for children with neurological disorders, particularly SBH.
NeuroKids has a new procedure for treating children with hydrocephalus, called Endoscopic Third Ventriculostomy with Choroid Plexus Cauterization (ETV/CPC), an alternative treatment for shunting.
Anne Kagotho, coordinator of NeuroKids, said the organisation was founded on the understanding that early intervention and
public awareness change SBH outcomes.
“Hydrocephalus is not a death sentence; with timely diagnosis and proper care, these children can lead meaningful lives,” she said.
“Many parents have been unable to get this information, so we are here actually to create that awareness, to be able to make as many parents aware that there is help available and not to feel like they are isolated.”
NeuroKids also partners with hospitals to train health workers on surgical procedures and follow-up care with the aim of improving care models for hydrocephalus and spina bifida and ensuring children receive holistic care.
“We are working to strengthen referral systems and ensure that families get the right information before it’s too late,” Kagotho said.
“When they come out here, they can see and mingle with other parents who have been helped and supported, and they now start feeling like they are also part of the community.”
For the event, NeuroKids came in person to train parents and other stakeholders on how to take a role in the raising and caring of children with SBH.
- The Spina Bifida and Hydrocephalus Association of Kenya (SHAK) -Trans Nzoia County
Parents and individuals with SBH founded the community-based organisation SHAK-Trans Nzoia. Its members support one another, promote inclusion, and work to enact laws that safeguard the rights of people with disabilities.
In Trans Nzoia County, the chapter works with schools, hospitals, and local leaders to make sure children with SBH have access to education, therapy, and assistive devices.
According to Everlyne Jepkosgei, SHAK Trans Nzoia chairperson, the day was not only about awareness but also about action, calling for greater investment in rehabilitation and follow-up care.
“We want to see inclusive schools, accessible hospitals, and policies that reflect the realities of our children, as they grow into adults and their needs change. Inclusion is not just a one-day campaign but a lifelong obligation,” she said.
She further noted that the association empowers parents and caregivers to become advocates for their children.
“Our biggest challenge is stigma and lack of understanding, but every day, we remind our members that our children are strong, capable, and deserving of opportunities like any other child,” Jepkosgei explained.
- Kenya Red Cross
It is a humanitarian organisation that offers health care, emergency response, and community support throughout Kenya.
Through volunteer coordination, logistics, and first aid during the awareness walk, the Red Cross provided support for the SBH event.
Red Cross representative Benjamin Tanguli stated that their emphasis is on community support initiatives and inclusive disaster response to make sure individuals are not forgotten in times of need.
- Clubfoot Care for Kenya (CCK)
CCK is a programme of Hope Walk that extended its advocacy beyond SBH to include other childhood disabilities.
They focus on early detection and intervention for children born with clubfoot and other congenital conditions.
Primarily, they seek to eradicate disabilities caused by clubfoot through partnership with health facilities to establish clubfoot clinics where children born with the condition can access proper treatment.
Their team often joins awareness events like the one in Kitale to share information about available treatments and rehabilitation options.
They promote knowledge-sharing across different disability fields and help link families with specialists.
- Child Health International
It is a partner of BethanyKids, which continues to provide funding for mobile clinics and medical supplies.
Their support makes it possible for medical teams to reach children in remote areas who would otherwise lack access to specialised care.
They have also contributed to training programmes that build the capacity of local surgeons and healthcare workers.
The Anglican Church of Kenya, Diocese of Kitale, Imani IV, Madison Group, and the Disability Network also supported the event through medical, financial, psychosocial, and community initiatives.
Understanding Spina Bifida and Hydrocephalus
Kagotho defines spina bifida as a neural tube defect that occurs when the spinal cord and surrounding bones fail to close properly during early pregnancy.
Symptoms mainly for severe types include weakness or paralysis in the legs, loss of bladder or bowel control, and abnormal spinal curvature.
Hydrocephalus, on the other hand, is a condition where cerebrospinal fluid accumulates in the brain’s ventricles, leading to increased pressure that can cause brain damage if untreated.
“Hydrocephalus involves a blockage within the ventricles, leading to the accumulation of cerebrospinal fluid and increased pressure,” she added.
Symptoms in infants include rapid head growth, bulging fontanelle (soft spot on the head), irritability and vomiting, downward gaze (sunsetting eyes), and poor feeding.
In adults, they include headache, vision problems, balance difficulties, and memory or personality changes.
WHO found the pooled global prevalence of hydrocephalus in children at about 71.9 per 100,000; when associated with spina bifida, it rises to approximately 87.8 per 100,000.
Also noted that the global incidence of spina bifida is estimated to be between 1-10 cases per 10,000 live births.
Ng’ang’a explained that both conditions are common yet remain misunderstood in the communities, emphasising that early diagnosis and surgical intervention can improve quality of life.
“We see children stigmatised simply because of myths. What they need is care, not pity, with proper management, most children can walk, study, and live independently,” he said.
Causes and treatment
Kagotho noted that both conditions can have genetic or nutritional causes.
The exact cause of spina bifida is unknown, but it’s linked to folic acid deficiency in early pregnancy, genetic factors, certain medications like anti-seizure drugs, and maternal diabetes or obesity.
On the other hand, for hydrocephalus, it is either congenital (present at birth), often linked to spina bifida, or acquired (develops later), due to Infection like meningitis, head injury, brain tumor, or even bleeding in the brain
She added that some of the preventive measures, such as access to antenatal care and proper maternal nutrition, including folic acid supplementation before and during pregnancy, significantly reduce the risk of neural tube defects.
According to Ng’ang’a, rehabilitation and peer support groups are important in helping children gain confidence and independence.
He further noted the importance of physical therapy, clean catheterisation for bladder management, and access to assistive devices.
“It’s not just about treating the body; it’s about restoring hope and purpose for life,” He added.
Jepkosgei echoed this, urging the government to include awareness campaigns in public health programmes, adding that when communities understand the cause, the stigma fades and families stop hiding their children.
“Behind every child with SBH is a family trying to navigate stigma, hospital visits, and financial strain. When we build community networks and empower parents, we not only save lives but also restore hope and the spark to feel the purpose of life.”
Ng’ang’a emphasised the need for healthcare systems to stop discriminating against people with SBH, ensuring comprehensive healthcare as mandated by the constitution.
He called for health facilities to implement follow-up programs for these conditions, including weekly clinics for monitoring and providing necessary supplies.
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