My Hydrocephalus story: From five surgeries, ICU admission to certified journalist

I have come to return all Glory to God because my life has been a testimony. I have lived with Hydrocephalus, which I was diagnosed with at two months old and was the only survivor out of seven children that had surgery done to correct the condition.

My parents were told that I may not be able to go to school, I may have vision problems, may not be able to talk and do things expected of a healthy baby to do. Against all odds, I have perfect vision, and I am a graduate of History and International Studies from Joseph Ayo Babalola University, Ikeji-Arakeji, Osun State.

I have completed the mandatory National Youth Service Corps (NYSC) exercise, and I am currently an editor at Crest FM, a leading radio station in the city of Akure in Ondo State. Apart from working as an editor, I am also an entrepreneur in the sale of high-quality bed sheets, and I offer gift and fruit hampers. God has indeed been faithful to me, and I am always thankful.

My family members have been of great help to me because they have made living worth it for me by giving me the best. None of them have seen me as a burden, but have embraced me and supported me every step of the way.

My parents made one of the best decisions by giving me a sister, Oluwafunbi Ewaoluwa, three years after I was born. She has been one of the greatest joys in my life as my strongest support system. She has been part of every step in my life from primary school to my current job. We share a very strong bond that cannot be broken, and I am just glad to have her in my life.

My days at Joseph Ayo Babalola University were some of the toughest and darkest days in my life. I fell ill a lot during my second year, visiting the school clinic multiple times, with my dad coming to pick me up for further treatment back home in Akure. It got worse in my third year when I had to leave school after first semester exams, after falling very ill and missed school for two semesters. What should have been the first semester of my final year was time away from class.

I had multiple bouts of seizures, a complication of Hydrocephalus, which affected my health and put my parents on edge. I had a particular seizure that took me to Obafemi Awolowo University Teaching Hospital in Ile-Ife. It lasted for more than seven hours and kept me in the Intensive Care Unit (ICU).

All these kept me away from school, but I resumed writing the exams I missed, and to the Glory of God, I graduated with my mates in 2019 and proceeded with my NYSC the year after.

Another defining moment in my life was in March 2022 when I underwent shunt replacement surgery, a common procedure for persons living with Hydrocephalus, after constantly falling sick, and my right eye was twitching. The surgery was a success, and I commenced physiotherapy to help with the mobility of my legs, as I cannot walk on my own and use a wheelchair to move around.

I use a calliper for strengthening my legs, and anytime it is worn, I cry a lot. I think all the physiotherapists have the same hands, because I wondered why their hands are always so painful, but I understand that it is for their patients to get better. I could not continue doing the physiotherapy after I started having persistent headaches. The headaches were so intense that even painkillers did nothing to relieve them.

I started working at Crest FM around January this year, and I have been privileged to meet good and caring people who treat me so well despite my disability. I had no idea how to write news stories or how a radio station operates, but I was taught how to write news, and I have become good at it. I also enrolled in a journalism school run by Crest FM, which I have completed and now have a grasp of the journalism profession.

My time with Crest FM was disrupted by the persistent headaches I mentioned earlier. I tried as much as possible not to let people in the office really know. I reached out to Mr Afolabi Fajemilo, Executive Director of Festus Fajemilo Foundation, a Non-Governmental Organisation (NGO) that caters to persons living with Spina Bifida and Hydrocephalus (SBH). I asked him if he had ever come across anyone who was experiencing persistent headaches like I was, and he told me that a lot of people with Hydrocephalus develop different symptoms, and some people may experience pain in their eyes.

I reached out to my doctor, Professor Edward Komolafe, a neurosurgeon at Obafemi Awolowo University Teaching Hospital. He initially said nothing was wrong with my shunt, but the headaches persisted, and he referred me to his wife, Professor Morenikeji Komolafe, a neurologist at the same hospital. I saw her, and despite taking some medications, the headaches persisted. I had sleepless nights and was in so much pain, I tried so much to hide it, but it was obvious to some because I was not my usual self.

At a point, I stopped communicating with the Komolafes to make it not seem like a bother to them and my parents. Mr Fajemilo however advised me not to ever stay away from my doctor or feel like I am a bother to him. I reached out to Prof. Komolafe again, and he told me to do a CT scan, which revealed that the upper region of the shunt had moved from its original position and was a possible cause of the headache. I was required to undergo minor surgery and take time off from work to be able to recover. I was granted time off from work and had the surgery. It was successful, and the disturbing headaches finally stopped.

I’m writing this story to let people know that God is ever faithful. I have done a total of five surgeries since my birth and Hydrocephalus diagnosis in 1998. I remember four of them as very tense, with a lot running through my mind, whether I would come out of it alive or not or if there would be any complications.

I’m thrilled that every surgery has been a success, and I want to use this to encourage anyone living with Hydrocephalus or any related neurological condition to never give up and keep hope alive always.