WSBH Day 2023: My experience living With Spina Bifida

Acording to my mum, I was born on Tuesday 27th, April 1999 at a hospital in Lagos State. Immediately I came out of my mom’s womb, it was discovered that I had an opening at my back where my spinal cord was not only visible but drawn out of my spinal bones. The doctors saw it but my mother did not know my condition because she was yet to recover from the stress of delivery. It was later that my mother was told that I had a condition and it was diagnosed as Spina Bifida.

My mother was referred to take me to Lagos State Teaching Hospital (LUTH) where I was to have a corrective operation and to close the opened site at my back. The operation was delayed due to logistic problems ranging from bed space to availability of suitable blood. It was delayed for four months but cleaning of the site continued at the local clinic where my delivery took place.

Eventually, the operation was done and post operation treatment began. It was torturous. At times no doctor to attend to some issues because they are on srike. No nurse to perform her duty because the nurses have axe to grind with hospital management or the supporting staff has one greiveance or the other. The healing of the site was very slow due to both human and environmental factors. My mum and I spent four months on admission.

It was then time for physiotherapy. That was another ball game entirely. Few professionals to a very large number of patients. At times you get to the clinic at 6am and you are number 200 plus on the waiting list. In an attempt to attend to as much patients as possible if not all, the job is not throughly done. At the end of the day it became ineffective.

Physiotherapy done and when I grew a little older, I began going for therapies meant for strengthening and straightening my legs. When it was time for me to start schooling, I was enrolled into Kith and Kin International Schools in Ikorodu, Lagos. The school accepted and took good care of me, they never discriminated against me. There were times when I messed myself up as a kid and they took me and cleaned me up and clothed me in a new uniform and it was never added to my school fees.

My mum went to the proprietor of my school who is chief Kaoli Olusanya to thank him for his good deeds and to tell him of her intentions to withdraw me from his school as she could not repay him for his generosity in making me feel comfortable by clothing me in new uniform whenever I messed myself up. He also made learning conducive for me at no extra cost. He however told my mum not to worry that he would take care of everything that concerns my studies and he did.

Chief Olusanya gave me scholarship that covered my education from primary to secondary school. The journey through school was challenging, I had low self-esteem and I also had problem with mathematics and other related subjects. I had lovely teachers and classmates in all the classes who were always willing to carry me along in everything that went on in class.

I graduated on July 14, 2017, and in that same year I gained admission into National Open University of Nigeria to study Mass Communication. In that same year, I discovered the reasons behind my bladder and bowel incontinence and the catheter and bowel wash was introduced to me. I graduated from university in March 2022 and I presently work as an administrative officer at my alma mater, Kith and Kin International Schools.

Every October 25 is World Spina Bifida and Hydrocephalus Day and I will like to use this opportunity to say a big congratulations to all spina bifida warriors. You have made yourselves and the world proud. Please keep it up. The theme of this year’s WSBH awarness month is “Accessibility For All”. Accessibility according to Cambridge dictionary means to the ability to be reached or obtained easily.

On Monday, October 23rd, Festus Fajemilo Foundation (FFF) organised a panel discussion for the youths. I was among three other youths that spoke on the their experience living with Spina Bifida as adults in Nigeria. We highlighted our challenges in building relationships, acquiring education, healthcare and the financial burden getting relieve items such as catethers and daipers. And there’s also nonchalance and ignorance about Spina Bifida and Hydrocephalus.

I will like to conclude by asking the Nigerian government at all levels to make life easy for people with Spina Bifida and Hydrocephalus and other disabilities. They need work in sync to implement legislation that makes accessibility attainable for all.

Happy World Spina Bifida and Hydrocephalus Day. More grease to your elbows!