Let’s talk about two conditions that affect thousands of Ugandan children every year, that are almost never discussed in public, and that most communities still explain with witchcraft.
Spina bifida. Hydrocephalus.
You’ve probably seen a child with one or both. You may not have known what you were looking at. And if you live in Uganda, someone near you almost certainly told that child’s mother it was her fault.
It wasn’t. And the child didn’t have to suffer the way they did.
Here’s what’s actually going on.
First, the basics.
Spina bifida happens when a baby’s spinal cord doesn’t close properly in the first four weeks of pregnancy often before a woman even knows she’s pregnant. The result is an opening in the spine that causes nerve damage, paralysis, and in 90% of cases, lifelong inability to fully control bladder and bowel function.
Hydrocephalus is a build-up of fluid in the brain. When the system that produces and absorbs cerebrospinal fluid gets blocked or overwhelmed by infection, by a tumour, or by spina bifida itself pressure builds, and the skull expands visibly. That’s the “big head.” It’s not a sign of evil. It’s fluid. And it can be treated with surgery.
Here’s how connected these two conditions are: 66% of children with spina bifida in low-income countries such as Uganda also develop hydrocephalus. They usually arrive together.
Now, the numbers that should make you pause.
Uganda has no comprehensive national data on how many children are born with spina bifida and hydrocephalus. No single report ever produced these statistics! That alone tells you something about how visible or invisible these children are in national planning.
What we do know: the incidence of spina bifida in sub-Saharan Africa is significantly higher than in wealthier countries. In Nigeria it reaches 7 per 1,000 deliveries. In high-income countries, folic acid fortification in food has brought the rate down to 0.5 per 1,000 live births. The single biggest reason for that gap? A vitamin. A 400 microgram folic acid supplement taken daily before and during early pregnancy dramatically reduces the risk of neural tube defects like spina bifida. Uganda’s women largely don’t know this, while others take under the recommended micrograms, either due to ignorance or inability to afford the right dosage.
A survey of hospital data from major hospitals that manage Children born with Spina Bifida, Hydrocephalus or both, in Uganda reveals that over 2,000 neurosurgeries for spina bifida and hydrocephalus are conducted annually. Key facilities conducting the surgeries include Mulago National Referral Hospital, Mbarara Regional Referral Hospital, and CURE Children’s Hospital in Mbale.
Each surgery is a family that somehow found their way through. Many more never do.
Nationally, 83% of Ugandan children aged 4-14 are in school. Among children with spina bifida and hydrocephalus, that figure is far less, almost nascent and the few that make it into the education system often face bullying, rejection, and most times, dropout. One mother visited five schools before finding one that would accept her child. The first four said no. Because of incontinence.
Incontinence is made up of a dozen letters, but it is the foundation of life-long struggles, a potential killer of self confidence and positivity. We will discuss incontinence another day.
Here’s the part that gets uncomfortable.
The medical facts above are not what most Ugandan communities are working with when a child with spina bifida is born.
What they’re working with is this:
The child is cursed. The mother was bewitched. She used family planning against God’s will. She walked past a grave while pregnant. She named the child after the wrong clan. The child will only get worse and die. There is no point in taking it to hospital. Do not breastfeed it. Do not register it. Do not count it.
These are not fringe beliefs held by a few uninformed villagers. Research conducted across Uganda’s four major regions central, eastern, northern, and south-western by Femke Bannink, Koenraad Stroeken, Richard Idro & Geert van Hove (2015) titled Community Knowledge, Beliefs, Attitudes, and Practices towards Children with Spina Bifida and Hydrocephalus in Uganda, published by the International Journal of Disability, Development and Education, found these explanations widespread across communities, and sometimes shared by the health workers those communities are supposed to trust for referrals.
One neurosurgeon put it plainly: “Health workers keep the same beliefs as the community they live in, despite medical education, so they do not refer.”
The practical consequences run from the heartbreaking to the horrifying. Children are hidden in houses. Locked indoors. Excluded from government programs one child was refused registration during a national census for children under five. Mothers are abandoned by husbands, condemned by in-laws, and publicly identified in their communities by their child’s condition: “That woman who gave birth to the abnormal child.”
In the northern region, where two decades of war with the Lord’s Resistance Army compounded existing cultural beliefs, the practice of drowning infants with visible disabilities in rivers has been documented framed as accidents, reported by service providers as ongoing. The child is tied to the mother’s back, she walks into the river, she loosens the cloth. It is not an accident. And while some say it is dying out, field evidence says otherwise.
Neglect, to the point of death, is practiced across all regions.
But here is what also happens.
Attitudes change when people see evidence.
When a community watches a child they were told would die instead walk into school, sit at the front of the class, and speak at a public event about her condition, something shifts. Not immediately. Not universally. But measurably.
“Everyone told me my child will die. Now she is seven years old and goes to school. They are all surprised.”
That is a real parent. Eastern Uganda. Her daughter has both spina bifida and hydrocephalus.
Research consistently shows that what changes community behavior around disability is not information campaigns alone. It is visible proof. A child thriving. A parent standing up and saying: this child belongs here. Parent support groups where mothers and fathers who have navigated surgery, rehab, school rejection, and social stigma come together, are among the most powerful interventions documented in the literature.
The communities that see these children grow don’t just tolerate them. They invest in them.
Which is exactly why St. Matthew Spina Bifida and Hydrocephalus Alliance Uganda exists.
We work at the intersection of everything this article has described, the medical, the social, the cultural, and the deeply human.
We connect families to surgical and rehabilitative care before the window closes. We run community sensitization programs that replace supernatural narratives with facts, the kind of facts you just read. We support parents to become advocates, because a supported parent produces a child with measurably better cognitive and functional outcomes. We push for inclusive education, because a child who cannot get into a classroom is a child whose potential is simply being wasted. And we promote folic acid awareness, because a meaningful percentage of these births don’t have to happen the way they do.
We call it an alliance because that’s what it is. Not a charity dispensing help from above. A coalition of community based initiatives, families, health workers, educators, and advocates who have decided that a child born with spina bifida or hydrocephalus in Uganda deserves the same chance as a child born anywhere else.
The concept we build on is Obuntu bulamu the Luganda/Ugandan articulation of collective humanity (Ubuntu). A child who belongs has a chance to live, to participate, to become. That framework is not imported from abroad. It already exists here. We just help people practice it.
So what can you do?
If you’re a health worker or clinician: know the referral pathway. Hospitals such as Mulago, Mbarara, CURE Mbale. A child arriving early gets a fundamentally different outcome than one arriving late or not at all.
If you’re an educator or school administrator: a child who is incontinent is not a child who doesn’t belong in your school. They belong. Reach out to us for support in making that work practically.
If you’re a donor, foundation, or CSR lead: the SBH funding gap in Uganda is real, documented, and wide. Community outreach, parent support, and rehabilitation services are chronically under-resourced. There is room for serious partnership with measurable outcomes.
If you’re a policy maker: Uganda needs national prevalence data on SBH, folic acid fortification on the policy agenda, and a referral system that actually functions at the community health worker level.
And if you’re a parent who just recognized something in this article, just reach out. You are not alone. Other parents have stood exactly where you’re standing. Some of their children are at the top of their classes.
The child they told you to give up on? Will be an inspiration to many!
St. Matthew Spina Bifida and Hydrocephalus Alliance Uganda is an organization walking alongside children living with spina bifida and hydrocephalus, the families who carry them and the community based initiatives that serve them. Through early diagnosis, surgical referrals, rehabilitation, inclusive education, and community-based outreach, St. Matthew addresses what Uganda’s mainstream health and education systems largely leave behind: the long, complex, and deeply human journey of raising a child with a neurological condition.
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