Most of what I know about attitude towards disabled people stem from watching my nephew who lived most of his life in a wheelchair.
The morning of his birth, I asked my sister if she needed me to stay at home, she was happy for me to go to work since I will be back at 3pm. My factory job was a shift work, I was on morning duty that week 6.30 to 2.30. Work place only about a mile from home. By the time I arrived home, Emmanuel had been born at a local clinic. He was the second child, my sister arrived home that evening, everything was fine with the new baby – as fine as we can all see physically.
Within weeks, *Emmanuel started showing signs of discomfort, he cries endlessly. Amongst many signs at the time was him being irritable a lot – why wouldn’t he stop crying? Then we started noticing physical symptoms – his head was disproportionately bigger than the body, his eyes were okay but the focus weren’t ‘normal.’
Then it became clear Emmanuel needed help.
My sister’s journey started with LUTH (Lagos State Teaching Hospital) being a place to go for paediatric issues. She visited on several occasions. She was prescribed tablets to use but no joy as the little one still in pain. This was between 1993 and 1995, a lot has changed since then.
It was in 2003 when I came about a research paper on hydrocephalus, I knew it was exact same disease Emmanuel has. He did his surgery at OAU teaching hospital in 2004, it was 10 years too late as the pressure of the fluid on his brain had done enough damage on his learning ability and use of limbs.
From Emmanuel’s experience, I have learnt that hydrocephalus is common than we realise. The only way to treat this condition is surgery in infant (for children that were born with the condition), this way they are given the best fighting chance. If untreated, accumulated fluid put enormous pressure on the brain so kids with this condition likely to have problem walking and end up with learning difficulties – this was the case for Emmanuel, he was wheelchair bound.
When I was researching this disease years ago, there was nothing to find in Nigeria, there are a few accessible academic papers in the west – which was fantastic as it just helps to put too many assumptions to rest.
Now, in Nigeria many parents are coming out and sharing their experiences with others, providing tips on how to get help. This article talks about Festus experience, a Lagos based with the condition. The picture of Festus looks similar to how Emmanuel was at the same age. The family seems to have gotten help for LUTH as they did their surgery when their child was just over one year old. The family now has a foundation to raise awareness about hydrocephalus in Nigeria. Story of what Festus went through is very similar to my sister’s.
Emmanuel had a stroke in October. Doctors helped. Within weeks, he regained his speech and use of his hands, manage to crawl to the toilet and regained a bit of dignity. So we all had hope that he was on the path to full recovery. On Feb 28th, he complained of unbearable pains. He had his sister and parents chatting with him till 1am. On March 1st, my inlaw called to say we (my family) lost Emmanuel.
He was only 23 years old.
Thank goodness for social media, people can share information quite easily these days, a child born with this condition today has a better chance of getting help early in Nigeria so to minimise the impact.
I know people will still do what they feel most comfortable with, from what I have read so far, surgery is the only solution to lessen the impact of damage caused by this disease. This is done by draining the liquid and implanting a ‘plastic’ to drain future fluids preventing it from accumulating on the brain.
Common theme I found with Festus, Emmanuel and a few others that I read online is getting help from their religious leaders. Faith works so is prayer, but with hydrocephalus, timing of surgery is very crucial.
*Emmanuel goes by a different name at home