Our 28 Days — How Hydrocephalus Went Undiagnosed for Nearly a Month
The fever started, and we gave him paracetamol.
That is always how it starts, isn’t it. Something manageable. Something every parent has done a hundred times. You check the temperature, you give the dose, you watch through the night.
Two or three days later, the fever had not broken — it had climbed. We took him to the doctor.
Throat infection, he said. He prescribed antibiotics. We went home and began the course, certain that within a few days we would be through the worst of it.
The fever did not go down.
We went back. The doctor increased the strength of the antibiotics. We went home again. We came back again. Every second or third day — back to the clinic, back to the waiting room, back to a doctor looking at our son and ordering a new test or adjusting a prescription. I lost count of how many times. Each visit had its own logic, its own small hope. Each visit ended with us carrying another piece of paper out into the car park, trying to make sense of it.
One of the doctors ordered a blood and culture test.
The results came back: pneumonia.
Finally. Something solid. Something with a name. They started a course of antibiotic injections — 500mg, twice a day. Serious medicine, we thought. Now we would see progress.
Nothing worked.
Around this time, one of the doctors also tested for tuberculosis. The result came back negative. We noted it, filed it away somewhere, and moved on — because we had no framework yet to understand what that negative result might mean in the context of everything else that was happening.
On day twenty, we made a decision.
The hospitals near us were not finding the answer. The fever persisted. Our son was not improving. Whatever was wrong with him was beyond the reach of the medicine being offered. We packed what we needed and drove to a hospital in the capital.
There, a doctor ordered an X-ray. He reviewed the results and said, carefully, that there was a possibility of tuberculosis — he wanted to rule nothing out. They started TB medication.
The fever came down.
We breathed. Carefully, tentatively — for the first time in three weeks, the temperature was falling. We told ourselves this was progress. We watched our son, looking for the signs of a child returning to himself.
But his condition was not improving. Something was still wrong. He was not settling the way he used to. He was not the child we knew.
On the sixth day in the capital — the day the ward team told us they were preparing to discharge him — one of the doctors paused during his examination.
He was looking at our son’s head.
“His head is larger than it should be,” he said. He wrote something down. “I want to do an ultrasound.”
I remember the exact quality of the light when he said it. The particular quality of silence that follows a sentence like that.
The ultrasound showed hydrocephalus.
Enlarged ventricles. Fluid where there should not have been fluid, accumulating inside the spaces of his brain, building pressure that had nowhere to go. The doctor explained it carefully. I heard the words and I also did not quite hear the words. My wife and I sat very still.
This is where our real journey started.
They took fluid from his spine. They ordered an MRI of the brain. The picture that emerged was more complex than we had imagined: not just hydrocephalus, but a suspicion of brain tuberculosis — TB not in the lungs, but in the central nervous system. The infection that had been treated and not treated and re-treated, in different clinics with different names, had been reaching somewhere deeper than anyone had looked.
We stayed for five more days. Steroids were added to the treatment. The fever remained down. But his condition was worsening, not improving — he was irritated, agitated, distressed in a way that seemed to come from somewhere none of the medicine was reaching.
Then came the seizures.
Two of them, before we brought him back to the doctor. They started him on Lerace — levetiracetam, a medication for epilepsy — and it brought the seizures under control. We watched. We waited. We counted out the drops, morning and evening, and tried to read his face for signs of what was happening inside him.
After a week, his condition worsened again. The doctor increased the dose.
I sat looking at my son and thought: this is not a solution. This is management. Something is being managed that needs to be understood.
I had no medical training. I had no framework for what I was thinking. But I had spent twenty-eight days watching my son — measuring his responses, learning his face, reading every paper I could find — and something in all of that told me that increasing a medication was not the same as addressing a cause. I began to look elsewhere. I requested every test I could ask for. I sought different opinions. I kept going.
The diagnosis was not missed in a single moment. It was missed across nearly a month of good-faith effort — doctors working with the information they had, in the clinics and hospitals available to us. The throat infection may have been real. The pneumonia may have been real. The TB was real. And somewhere inside all of that, the hydrocephalus — and the brain TB, and the pressure building in his ventricles — had been growing, undetected, because no one had measured his head.
I have spent a long time thinking about those twenty-eight days. I will spend more time thinking about them. What I have tried to stop doing is wishing they had been different. I cannot change them. I can only move from where they ended.
They ended with a doctor pausing. Looking at our son’s head. Ordering an ultrasound.
That pause — one doctor’s noticing, on the day of discharge — is why we are still here.
To every parent reading this who feels something is not right: trust that feeling. Ask for the test. Ask the doctor to measure the head circumference. Say the words even when they feel too dramatic to say. Push, politely and persistently, until someone looks.
You know your child better than any chart.
*This article is written for informational purposes only and does not constitute medical advice. Always consult your neurologist, pediatrician, or qualified healthcare provider for diagnosis and treatment decisions specific to your situation. Read our full medic