How water in the brain, epilepsy, death tried to derail my life

The birth of a child is one of the sweetest experiences in life, and nothing is sweeter than when the child comes out without any complications or conditions, especially those considered congenital (present at birth).

That wasn’t for me though.

Head circumference is the measurement of a child’s head usually taken when a baby is born and observed as the baby develops. There was an unusual increase above the normal limit each time my head was measured.

I was eventually diagnosed with Hydrocephalus.

Hydrocephalus is a condition in which Cerebrospinal Fluid (called water in the brain in lay man’s terms or CSF) accumulates due to a blockage in the brain thereby making the head enlarged. CSF protects the brain and spinal cord from injury and also delivers nutrients to the brain as well as removes waste.

Hydrocephalus also occurs in adults, but is more frequent in babies and children. It is not a disease and cannot be transmitted from one person to another, though it can be hereditary.

A 2011 report (https://vector.childrenshospital.org/2011/08/hydrocephalus-tackling-a-global-health-problem/) by Dr Benjamin Warf of Boston Children’s Hospital estimates that there are 100,000 to 375,000 cases of Congenital Hydrocephalus each year in sub-Saharan Africa, with an annual economic burden as high as US$1.4 to a whooping US$56 billion.

Though some factors such as bleeding within the brain, brain tumours, diseases such as meningitis or other infections during pregnancy are implicated, the main cause of Hydrocephalus is unknown till date.

If left untreated for a long period of time, the accumulation of CSF could lead to an extremely enlarged head, which could make growing and development difficult for a child. It can also damage the brain and ultimately lead to death.

Hydrocephalus isn’t seen as a health priority in developing countries because most infants in Africa receive no treatment due to superstitious and religious beliefs attached to the condition.

There is no known cure for Hydrocephalus other than a surgical procedure to manage the condition.

Shunt placement is the most common surgical procedure for Hydrocephalus.

Surgery is done by placing a tube-like device in the head called a Shunt so CSF can flow freely without any obstruction.

Due to some problems with carrying out the procedure in Nigeria at that time, the only option was to do it abroad and at four weeks of age the surgery was successfully executed in France. My shunt runs from the head to the abdomen (the most common part) where the fluid is absorbed once inserted.

It however came with a bit of worry.

Doctors over there had made some very damning assertions that because I came late for the surgery as it should have been done much earlier, I was going to have delays in reaching development milestones such as learning to walk and talk.

For whatever reason, I defied those assertions and was able to walk and talk at the usual time a growing child would.

A huge sigh of relief and joy to my parents that I could live a normal life.

School life began but little was it known that another worrying chapter was about to be opened.

While in primary school I began to develop Seizures (a form of epilepsy), which is a common symptom of Hydrocephalus.

I would be on my own or around someone and suddenly start jerking (both arms and legs simultaneously), usually lasting a few minutes, which also makes me fall if I’m walking or climbing the stairs.

It was not the best of experiences because it catches the class off guard, makes the teachers and classmates panic a bit before all is calm.

The constant episode of Seizures made me the subject of mockery and bullying from classmates. They’d come to my front and display how I twitch, even exaggerate it and put their hands on my head and touch my shunt, claiming a wire is attached to my head and could cause an electric shock.

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Seizures are usually controlled with the use of medications known as anticonvulsants. I was given an anticonvulsant which worked for a while before I had a relapse.

I’ve had to skip a day or two from school to seek medical attention, sometimes missing up to a week. My dad would come all the way from Port Harcourt to Ibadan as a matter of urgency while my mum would seek every form of spiritual help possible.

That’s how distressing this period of my life was. Seizures are very serious because if not attended to can cause serious harm, injury and possibly death.

By the time I was entering secondary school, I had a new anticonvulsant I was taking which prevented seizures from happening.

Thank heavens!!!

I still met some of the bullies from primary school in secondary school as both schools are owned by the same institution. These guys still faked twitching in front of me, but I never fought them. I simply looked past and had no relationship with them, because they weren’t worth the attention.

Fast forward to University days. I always had phobia of what those days would be like and how I’d cope but apparently it turned out to be the most pleasing of experiences. I delved into the study of International Relations coupled with History for four years and graduated with a Second Class Upper Division (2:1).

A few incidents did try to pin me down in university though.

I had started having these constant headaches that won’t go away even after taking strong painkillers, and it brought my parents back in panic mode. There were fears maybe the shunt in my head was malfunctioning.

Dear Lord!!!

So I visited the hospital again after almost a decade and was asked to do MRI, CT Scans, and EEG to determine if the shunt was OK and no threat of seizures happening again. Happily, nothing threatening was detected.

The joy that came with the completion of my bachelor’s degree, was marred by the demise of my dad just days to my convocation.

If anyone was a reason for my existence; he was. He ensured I had the best care possible and did not allow any effects of Hydrocephalus or Seizures to be a setback to my life.

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During my NYSC, I began to have a drive on advocacy for people living with Hydrocephalus and other related conditions. I’ve seen a lot of mothers who feel hopeless about their child’s future all because they have a large head and developmental setbacks.

It’s a tough one for a mother, but if I could overcome all of that with the right care, reach milestones like bagging a masters degree in International Relations; having a fledgling career as a writer and blogger; writing on some of Nigeria’s and the world’s biggest platforms then truly, impossible is nothing.

This is not to say there aren’t massive setbacks, some that ultimately lead to the death of a person living with Hydrocephalus. I’ve witnessed two people die (a baby and a grown man) that really struck my heart just when they were making strong recoveries after surgery.

I was about to give up, but again I realised not everyone is going to die prematurely. Hence the need to run the race albeit they need the necessary support and care to make it happen. I’ve come across more people today (both young and old) and it gladdens my heart the giant strides they are making in surviving.

Growing up in a Nigerian society, there are massive stereotypes towards people with Hydrocephalus, Seizures and other neurological conditions. They are sometimes seen as spiritually possessed and as such are neglected by parents, family and are not associated with peers and the external environment. Some are left to die as their condition worsens and its just so saddening.

This is why advocacy, education and orientation is necessary. For a long time, I’ve felt reluctant to share my story, but I realise if I keep it to myself, I’m denying others hope and liberation they might not be aware of.

Kick out any form of stereotype you or any other person has towards people living with neurological conditions. A large head or a convulsion that might be very serious is not a license to neglect. Rather it’s a pass to show more love and care just like you would to a healthy growing child.

If I was given a chance to live despite the odds against me, these people can do the same.

This is my story on the day I add another year in my 30s and looking ahead to many more prosperous years.

I hope it inspires someone out there not to give up just because of a medical condition (whatever it is) that is standing in the way.

Olakunle is a Hydrocephalus survivor and advocate, graduate of International Relations at both bachelors and masters level, and is a versatile writer and blogger with appearances in various media. He has keen interest in persons living with neurological conditions and other special needs and is passionate about using his story to make a difference in their lives.