Life Of A Sickle Cell Warrior: Tales Of A Mother and Son
Written by Orevaoghene Asiemo (Tatafo Tony).
In Africa, it is the dream of a every family to have a male child as he is presumed to be the one that keeps on the family name. For a mother who already have five kids (all girls), the struggle for a male child can be very tough.
On the 6th of January some 30 years ago, God decided to answer a mother’s prayers. Oh how my mama wanted a son. It might interest you to know that her own mother only have one son, a family thing I guess.
Sickle cell and genotype awareness is something that was relatively unknown in the time of my birth. My father been a polygamous man have no other sickle cell warrior apart from myself. My mother already had 5 daughters and none was diagnosed with sickle cell anaemia.
On the day of my birth according to my mum, the Doctors pronounced me sick in the womb. She was told she will require the help of infusion to be able to birth me. At this point, her fear of losing me began. As God may have it, I came out successfully and was among the first set of kids to be born in my community hospital. My mother birthed a Genius.
To those who might not know, Sickle cell anemia is an inherited form of anemia — a condition in which there aren’t enough healthy red blood cells to carry adequate oxygen throughout your body.
Normally, your red blood cells are flexible and round, moving easily through your blood vessels. In sickle cell anemia, the red blood cells become rigid and sticky and are shaped like sickles or crescent moons. These irregularly shaped cells can get stuck in small blood vessels, which can slow or block blood flow and oxygen to parts of the body.
There’s no cure for most people with sickle cell anemia. But treatments can relieve pain and help prevent problems associated with the disease.
Sickle cell anemia is caused by a mutation in the gene that tells your body to make the red, iron-rich compound that gives blood its red color (hemoglobin). Hemoglobin allows red blood cells to carry oxygen from your lungs to all parts of your body. In sickle cell anemia, the abnormal hemoglobin causes red blood cells to become rigid, sticky and misshapen.
The sickle cell gene is passed from generation to generation in a pattern of inheritance called autosomal recessive inheritance. This means that both the mother and the father must pass on the defective form of the gene for a child to be affected.
If only one parent passes the sickle cell gene to the child, that child will have the sickle cell trait. With one normal hemoglobin gene and one defective form of the gene, people with the sickle cell trait make both normal hemoglobin and sickle cell hemoglobin. Their blood might contain some sickle cells, but they generally don’t have symptoms. But they are carriers of the disease, which means they can pass the gene to their children.
Living with sickle cell is terrible for an adult, for a mother nursing a baby who cannot tell what or where the pain hurts, it is even more painful. I was named Orevaoghene meaning Gods Will. Truly my life was and is certainly the will of God.
I was diagnosed with sickle cell anaemia very early, I think few months after my birth. With the help of well trained Doctors and Nurses who were just moved to my community hospital after its commissioning, my mother got all the advise she needed to take care of me. Back then there was no social media, no avenue for my mum to relate with anyone who is going through same health challenge or even a mother with a child suffering from sickle cell anaemia. Me and herself was all we got.
Growing up in my early childhood, I was so crazy about football and friendship. I always wanted to go out and be with friends so I can do all they can do. But my mum always try to stop me. This I never understood as I used to feel she hates me been happy. The only thing I know growing up is that I always feel excruciating pain all over my body anytime I play football. I also get so cold from going swimming with my friends which often lands me in the hospital with pneumonia. Though I do not understand why I was always in the Hospital as a child, I used to think everyone I played with is still in the hospital too. Little did I know I was the only one suffering from the fun time we had.
My mum protected me as a child like the mother hen would her chicks. Most of the sickle cell crisis I had as a child and even as an adult starts mostly in the middle of the night. With all the evil stories and news associated with the night time, armed robbery and co., my mum fears no evil. The fear of the night was never an excuse for her to keep me in pains till the next morning. She will pick me up after applying my home meds with no remedy and head for the nearest hospital. Doctors and Nurses became my best friends as a kid. I guess I was the most popular patient in my community hospital and most of the hospitals we frequently visit. While my peers where living their childhood having fun or going to school, I spent most of mine in the hospital.
Back home, I was loved. My mum and dad never took me for granted. I get listening ears when I want and most of my requests are granted asap. I wasn’t the last born, I have a younger sister but most times, people feel I am their last born as I get treated as one. My birthdays are celebrated all the time, my dad was never too broke to get me Christmas clothes even though they couldn’t get for my other siblings. All these they did to make up for the time of pains I had all year which is more than the time I spent been okay. Toys and games I get anytime I make a request, truly I was a king at home.
Back to my mother, she makes sure I am not allowed to do any house chores that will drain me. The only time she gets angry at me as a child is when I refused taking my routine drugs which is something I used to do a lot. I hate taking drugs when I am not sick. I would tell her I am not sick, that I will only take the drugs when I am sick. By this time I am still yet to understand I was a sickle cell warrior. My mum will only try to explain to me why I should take the drugs everyday, but she never used the word “You Are A Sickler” on me. She will just find other ways of explaining to me. Sometimes I understand, other times I don’t.
When I began to understand I was a sickle cell warrior, I started to realize why my childhood was so messed up. Why I missed lots of school time. I remember how I will wake up to see my mum crying by my side in the hospital for God to not let me die, even if that is the only thing that he will do for her all her life. Her tears always moved me to tears. She constantly lived with the fear of losing her son who though was never given a chance to life, broke every obstacle to still be alive. My continuous existence was and its still my mother’s best miracle.
My Education was rough, very many off school days, from kindergarten to my higher institutions. Those who know me well can attest to this. Despite all these off time, I was always among the very best in my class. My mum never wanted me to go faraway from her all in the name of schooling. This is why I did all my education in Delta State.
I wanted to go to Uniben or Uniport, I did my very best to get these admissions. I remember travelling to Benin for my Uniben post ume in 2010. When I got to Benin, I followed my friend whom I put up with to check out the school. On our way back, a heavy downpour met us. When I got home, I was so cold. My friend gave me hot water to bath with as I thought with that I will be fine. Little did I know its just the beginning. I woke up in the middle of the night with pains all over. I didn’t take any medication with me as I thought I was fine. I had to bear the pains all night as I wasn’t at home with my mum who will damn the night to rush me to the hospital.
The next morning my friend got me the meds I asked him to get for me. I took them and felt better to an extent. I proceeded to the exam hall. I was writing in pains. It got to a point I couldn’t take the pains anymore, I decided to submit my script and rush to the park to return home to Delta State. I remember been the first person to submit in the hall. Fast forward to when the result came out, I missed out on the pass mark for admission with just two marks. This made me give up on schooling faraway from home as I had to accept my ordeal was God’s answer to my mother’s prayers.
When I got admission to study Accounting at Delta State Polytechnic Ozoro, my mum opted to move to school with me as my room mate. She was so convinced I can’t take care of myself. After much argument over the matter, she asked me to get a room mate. Then it was time for NYSC. Another battle. Guess where I was posted to, Katsina. My mother will not hear it. It was January, a time of cold in the Northern region. It was a No No for her. She convinced all my siblings that I must not go for my NYSC. That I should go for exemption even when I was not up to 30 years. I was so mad as it seems to be a gang up against me. By this time my dad was no more, it was just me, my mum and siblings. I told them I must go for my NYSC. I told them I will not forfeit my dreams all because of sickle cell. At last, I was allowed to go on the condition that I apply for relocation on health grounds.
My mum and I have experienced things together in this sickle cell world. My first and only experience with armed robbers happened while on admission in the hospital. I remember how she and the nurses where locked up in a room downstairs while they came up to me to take my phones with guns pointed at me. My mum only went downstairs to call the nurse that my drip is finished for them to replace it, little did she know she was walking into the lions den. After they took my phones, I waited for almost an hour and my mum wasn’t forthcoming, I had to take my drip downstairs only to see that they were locked up in a room. I was the one who let them out.
Life can be really depressing with us sickle cell warriors. I have had crisis, I have heard Doctors tell me “We thought you won’t make it”. I have been inches close to death on several occasions, but God has always brought me back. I do not know why as I do not claim to be a saint, but I know that the prayers of a mother for her only son cannot be overlooked by God. Today, 6th January happens to be my Birthday. Today I have been given an opportunity to live more and also to prove to science and medicine that God is the giver of life. Yes it can be very annoying to have people control your life, but the truth remains that if my mother was careless about me, maybe I won’t be here to share this story today. I love my Mother and I will always make her proud.
Dedicated to my mother, Mrs. Ruth Asiemo and all mothers/caregivers of sickle cell warriors. Please never give up on your Children/ward.