By Jamila Yunusa Sulieman
They say ignorance is bliss, but only to the ignorant. Over the years, I have read articles on Sickle Cell Disease and witnessed some close associates deal with the unending crisis. Little did I know it would be a first-hand experience for me.
I got married without a genotype investigation, though my spouse was very sincere with his as I carelessly assumed I was of the AA genotype because my siblings all had the AA genotype except for my immediate elder brother. Careless, right? My genotype Status dawned on me during the routine medical test for antenatal. Naturally, I broke down, and full of disappointment, I prayed and cried. I had my first child and two more, which were all declared healthy and free of Sickle Cell Disease.
It was bliss; family members would congratulate me and help me praise Allah; the feeling was more like hitting the jackpot. Four years passed by after the birth of my third child, and just then, pain and fear decided to take a seat in the kingdom of bliss. I had taken myself for an ultrasound in one of the prestigious Ultrasound service providers, where I was declared eight weeks gone. I took one of the fastest routes to my place. I walked slowly but could feel my heart beating faster; I didn’t have the excitement of pregnancy because all I felt were premonitions.
I would cry myself to sleep, and some nights, I would think deep into the night. I sparked out of melancholy. I started my antenatal clinics at 12 weeks of gestation. I became even more prayerful even though I knew I had very slim chances of having a child who wouldn’t have the SS genotype as scientifically proven. Time passed so fast, and it was 40 weeks already. I welcomed my bundle of joy with much happiness and prayers but with so much fear and guilt.
The tension in me grew as the days passed by. He was one sickly child with a huge appetite. It was about six months when I finally summoned the courage to take him for genotype testing; after samples had been taken, I waited patiently for the test results; the wait seemed like forever. After waiting three hours, I had to enter the lab and demand the results. The microbiologist would give excuses, and so I knew something was up.
A few minutes later, the most senior microbiologist in the lab walked up to me. Before he could complete what he was saying, I asked, “It’s SS, right?”. The affirmation on his face broke me. I walked home crying with my baby strapped to my back, and I kept repeating to myself, “I am a bad mother. I have failed my child. What have I done? How can I subject my own child to this?” I wept, I became sobber, I didn’t feel happiness or joy around me. It affected my work, my family life and my social life.
Although I was down, I immediately registered him for the SCD clinics, I took precautions, I improved his diet, I began researching Sickle Cell Disease, I connected with mothers with Sickle Cell Disease, and we shared observations and suggestions. The nurses and doctors were always welcoming and readily available. Unfortunately, we come across people who do not understand our situation and make us feel we are just blowing things out of proportion. If only they knew the weight we carry in our hearts and the hopelessness we sometimes feel.
Sometimes, I forget his medical condition, but whenever he breaks down, it feels like the end of happiness; the whole feeling of guilt and carelessness becomes a rebirth in my life. Those days and nights of sleeplessness, the pain of watching him go through the pain and all I can do is pray and give him the best care I can. My heart gets shattered into bits and pieces. This I have brought upon my child.
I question myself whether he would grow up to have a normal childhood like every child. What will be my answer when he begins to question his medical state in future? Would he forgive me? Would he see me as a good mother? Will there come a time when I will stop biting myself so hard?
Indeed, ignorance is not bliss but a silent time bomb waiting to explode. Love and attraction should not be the only basis for marriage; genotype plays a key role. It is time we stopped only reading about Sickle Cell Disease and began to give genotype investigation its due.
Jamila Yunusa Sulieman is an Abuja-based mother of 4 and a graduate of Ahmadu Bello University. She has a passion for enlightening others and imparting knowledge. She can be reached via suleimanjamila21@gmail.com.