Funto Oguntiloye Hydrocephalus

Hydrocephalus: How coping with discrimination strengthened Funto’s mental health

Nigerians living with disabilities are often marginalised and discriminated against, which has dire consequences not only for their daily living but mental health as well.

The nine-month process from pregnancy to childbirth can be very complicated and delicate. When the child is born healthy however, those fears and anxieties are put to bed.

Like for every parent, so it was for Mr Isaac Oguntiloye, a veterinary doctor and his wife, Mrs Mojisola Oguntiloye, a teacher, who welcomed their fourth child on May 12, 1998, in Akure, the capital city of Ondo State.

Funto Oguntiloye Hydrocephalus

On the day of the traditional naming ceremony the female child was christened Oluwafunto Boluwatife.

Every parent looks forward to seeing a healthy growing child and certainly it was for Funto, as she is called for short, but things took a different turn after her naming ceremony. There was an unusual swelling on her head which got her parents very worried.

“It was detected after my naming ceremony. My head started to swell, so I was taken to State Hospital, Akure and from there I was referred to UCH [Ibadan],” Funto began.

“I was diagnosed of Hydrocephalus and I was operated upon when I was two months old (July 1998). It was so strange to my family because they never heard of the case before but they had to accept it with faith.”

Funto was lined up to have surgery with six other children at the University College Hospital in Ibadan. She was, however, the last to be operated on and the only child to come out alive from the theatre.

Hydrocephalus is the excess build-up of Cerebrospinal Fluid (water) in the brain. CSF provides the brain with nutrients and sieves out waste, all needed for proper function.

Continuous build-up of the fluid due to blockage can cause brain damage, thereby hindering cognitive growth and development.

Hydrocephalus – which is prevalent at birth and in young children – has no established cause, though bleeding within the brain, brain tumors, meningitis and infections during pregnancy are implicating factors.

The most common treatment to stop the build-up of CSF is by inserting a tube-like device called a Shunt which allows for free flow of the fluid without obstruction. The Shunt is usually there for life and might need revision or correction periodically depending on the state and proper function of the device.

According to Funto’s mother, Mojisola, there were fears she would not be able to attend school because as at three years of age, she was still unable to crawl let alone walk. This developmental delay got her parents worried but some church members encouraged them to enroll her in pre-school nonetheless, which proved to be the right decision.

“We thought Funto wouldn’t start school early because she didn’t quickly crawl so we were worried. One mummy in church, Mummy Fambegbe, introduced us to a daycare. It was there Funto was taught how to sit,” Mrs Oguntiloye narrated.

There was difficulty in getting Funto into primary school because of her condition, but another church member, Mrs Mojisola Adewuyi, was ready to accept her.

“Mummy Adewuyi, also a mummy in our church came over to the house and she said we should bring Funto to her school because no one was ready to take her because she couldn’t walk,” Mrs Oguntiloye continued.

“When Funto got to school and she saw that her mates were walking, she started taking steps, although she would need help from others to walk.”

Speaking with Mrs Adewuyi, the proprietor of Dominion Heights Nursery and Primary School, Akure, she strongly believes in inclusive education because all children deserve to be educated adequately without any bias or discrimination.

“I believe every child no matter what deserves the opportunity to go to school without being discriminated upon. It’s the right of every child to be educated,” she said.

“In more advanced countries, government provides adequate facilities for them but where there is none, we should be charitable enough to fill such voids.

“I also admitted a child with hearing abilities for kindergarten and nursery before I counselled the parents to transfer her to the school for the hearing impaired here in Akure.

“And mind you Funto is my daughter. We are family. I couldn’t turn my back on the plight of her parents. I had to support their efforts and I’m so glad I did. She has turned out to be such a darling and I’m eternally grateful to God that I could be for her the support system she needed at that time. I’m proud of Funto’s achievements. Thanks for looking adversity in the face and courageously saying “this is not my destiny”.”

The Oguntiloyes are members of Agape Christian Ministries, a big church headquartered in Akure and run by prominent societal figures in Pastor Felix and Funke Adejumo who established the church in August 1988.

The Adejumos have a very close bond with Funto and her family and are very supportive even with her condition.

It is often a norm to see churches and other religious organizations shy away from people living with disabilities. At Agape Christian Ministries, however, people like Funto and others with special needs feel comfort and love where they are provided with wheelchairs and other accessibility aids.

Perhaps, this is the orientation that made members such as Mrs Fambegbe and Mrs Adewuyi make schooling easier for Funto.

After Primary school, Funto proceeded for secondary school but was denied admission because of her condition despite doing excellently academically.

She eventually got admission into Olufunmilayo Comprehensive High School, Akure where she spent her junior years.

Before heading to senior secondary school, she had to do a Tissue Release for her left leg and appendix surgery. Funto joined St. Frances Academy, Akure and attempted NECO exams in SS2, which she did pass likewise her WAEC and JAMB in SS3.

After completing secondary school, Funto applied to study Law at Obafemi Awolowo University, Ile-Ife but didn’t get admitted because she didn’t meet the Post-UTME cut-off mark.

Funto Oguntiloye Hydrocephalus

She opted for a private institution and gained admission to Joseph Ayo Babalola University, Ikeji Arakeji in Osun State in 2015 to earn a degree in History and International Studies. She was 17 years old at the time of her admission and that was a massive achievement considering her neurological condition.

Funto’s university days are considered to be the toughest and most challenging in her life as she was in and out of the hospital most times and she missed school a lot. It often tested her mental health, especially her inability to walk and the episode of seizures she had in school.

“Seeing my mates do things I can’t do can be very sad. When I was in school, it wasn’t easy seeing my mates going to class on their own, while I have to wait for drivers to come and pick me up. I was also restricted, I couldn’t move around like I wanted to,” Funto recalled.

“It was embarrassing when I was having seizures and the doctors in school had to call my dad when they could no longer handle it. From there, I would come and stay at home for few days and go back to school. This went on and on.

“Even in a private hospital that was trekkable from home, the doctor had to refer us to go back to OAU Teaching Hospital when he couldn’t handle it any longer. It was painful to see my family members run around just so that I can feel better.

“In the aspect of the continuous physiotherapy, it was hell, it was quite painful and discouraging but here I am still pushing through.”

Despite these setbacks, Funto still graduated in 2019 against all odds.

One person who is of great help to Funto is her younger sister and fifth child of the Oguntiloye family, Oluwafunbi.

Due to the wide age gap that exists between Funto and her older siblings, it was going to be difficult for them to stay in close touch with her as she grew. It was thus advised that Mr and Mrs Oguntiloye have another child. Funbi was born three years after Funto (2001) and the two have a very tight relationship with each other.

“I’m lucky to have Funto as my sister because she cares for me genuinely. We always have each other’s backs no matter what. I argue with her sometimes which is normal between siblings and get angry at her but it never lasts, we always reconcile easily. Basically, we have a very strong sibling bond,” Funbi said about her relationship with Funto.

Funbi says getting to care for Funto isn’t easy but attests to the fighter that she is which has helped her in thriving in adversity.

“Growing up, Funto was the one always taking care of me and we did almost everything together. She was very healthy and lively back then and she didn’t care what people said or did then,” Funbi continued.

“I have never been ashamed of her instead, I’m always angry when people stare at her like she’s plagued or something. She’s just physically challenged and nothing more. When she started getting weak it was usually painful to watch. Whenever she’s ill it scares me to death because it’s always very serious, so I always have terrible thoughts.

“Most of the time she’s always in serious pain but I have come to realise that she’s a fighter and would always be, so all she needs is her family’s support to keep her going.”

Funbi says she wants to see Funto express herself more and show more of her capabilities. She wants Funto to understand that she isn’t a burden to people, instead, she is a blessing.

“I see Funto depending less on people and believing more in herself because she is gifted and inspires a lot of people. Finally, I hope to see my sister know her identity in the world and the great plans God has in store for her.”

Funto Oguntiloye Hydrocephalus

Funto owes being able to cope living with Hydrocephalus to God and her family and other support systems. These are huge factors that have shaped her mentality and orientation.

“With God’s help and with the help of my family, I’ve been able to live with it [Hydrocephalus]. They [family] showed me love and I was surrounded with good people, from my primary school and up to date, I have never lacked good people,” she explained.

“Through the encouragement I got from my family and people around me, I made up my mind that I will stand out and I can achieve whatever I want to achieve.”

It is common to see people with disabilities get bullied in school by classmates. Funto stated she wasn’t bullied but had to contend with other forms of discrimination.

“I wasn’t bullied per say but I can say I was discriminated against. I remember an instance where I was denied admission into a secondary school because of my condition,” Funto said.

“Another time was when I went to write JAMB, a girl wasn’t friendly towards me and she refused to allow me sit in a comfortable place because it was her seat, although a supervisor instructed me to sit there.”

As a lifelong condition without a cure, Funto fears having to live with Hydrocephalus for the rest of her life. She, however, believes that with God on her side, everything will be fine as time passes.

“My fear is that the pain I experienced growing up might continue and I would have to live with the pain throughout my lifetime. But I believe by the special grace of God, everything would become better as I grow,” she said.

“Looking back at how far I have come since I was born, from surviving the surgery to passing through school, I know I have made progress. Its very evident in my life.

“The belief that one day I would make it and the confidence my family has in me has made me move forward. That’s the hope that drives me and keeps me going.

“One thing I have enjoyed at all times is favour. People were always moved to help me, not pity per say, I was just always loved by them when they hear my victory story.”

Indeed Funto’s story is a fascinating one, something echoed by her doctor, Professor Edward Komolafe. The consultant Neurosurgeon at Obafemi Awolowo Teaching Hospital, Ile-Ife, wants her story to encourage others living with special needs. He also wants the government and the relevant stakeholders to push for reforms that provide affordable healthcare for these categories of people.

“Funto’s growth and development and progress should be encouraging to others, especially those with special needs,” Prof. Komolafe asserted.

“Everyone should support those with special needs in all areas to achieve purpose in life and fulfill their dreams. Discrimination must stop and efforts should be geared towards education and skill acquisition.

“Favourable laws and policies to protect and shield these ones are to be put in place.

“If the country works towards providing affordable health for all her citizens, it will reach all however the less-privileged, and those with special needs must be given special consideration.”

May is Mental Health Awareness Month. Before now, the subject of mental health was not taken seriously. However with more people like Funto speaking out on her mental health challenges as a person living with Hydrocephalus, the norm is changing and she believes she will overcome the challenges.

“I’m restricted but that hasn’t stopped me from achieving my dreams because I know God didn’t create me to be in pain but he created me to so as to be a blessing onto others,” Funto said.

“Despite all that has happened, with God, my family members and the people God surrounded me with, I know I am going places.”

On a final note, Funto has a word of advice and encouragement to those who have special needs and are battling with mental health issues:

“Living with this condition [Hydrocephalus] is not easy, the challenges would definitely be there but you have to keep pushing, to keep fighting and everything will turn out well,” she concluded.

“Make sure God is your number one factor, he will help you through every step. Never give up on your dreams. Anything that is conceivable is achievable.”

At just 24 years of age, Funto Oguntiloye has seen a lot of ups and downs in her life. As she pointed out, it is not easy to live with a condition that affects the brain, not to mention mobility challenges. There will be so much to fear and get all worried about. The state of healthcare in Nigeria where costs of treatment is over the roof and medical personnel are often not available due to strike doesn’t help at all.

The good news is that in all this, there can still be a way to live a good, quality life. Not everyone with Hydrocephalus or some other neurological condition will make it. Some will die due to complications from surgery, some will have life-threatening infections that will ultimately lead to death. It becomes so gloomy and difficult to deal with.

Having a disability does not make those with it different or less of a human being. It rather makes them more special, for in their inability to do certain things, are extra special and unique abilities.

If society can show more love, care and concern like Funto’s circle has, mental health struggles will be less of a problem. Hopefully, society can reach that height some day.

Originally written in Pulse Nigeria on June 12, 2022, tittled: ‘How Hydrocephalus survivor coped with discrimination to strengthen her mental health’.

Funto is now 25 years old and runs a business involving the sale of quality bed sheets as well fruit and gift hampers. She can be reached via:

Instagram: Oluwafunto Tilo

Telephone/WhatsApp: +234 (0) 806 476 9780


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