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SICKLE CELL DISEASE AND THE CHALLENGES OF BECOMING A MOM

I want to share the birth story of my miracle baby. She is a miracle baby because I lost ten babies before God finally made me a mom. This is my story:

I have lived over three decades of my life with Sickle Cell Disease. To attempt to share my full experience living with the disease is to embark on an impossible mission. But the fragment that relates with my journey into motherhood, I will capture as best as I can while sparing you the details.

I got married on 13th November, 2010 (While my own genotype is SS, my husband’s is AA). He knew early enough in our courtship about my health condition, but he insisted on marrying me.

I got pregnant with a set of twins and everything was fine until I was about 27 weeks gone. I started stooling and I was seriously jaundiced. My eyeballs were green and my urine was the colour of Pepsi. The stooling was so serious that when my husband or mom went to dispose of my excreta, they had to leave another potty with me and that one too would be full before their return. It went on like that for two weeks. I was in a specialist hospital where they kept on giving me Flagyl IV. The situation did not improve. Everyone that came to check on me at the hospital and saw my eyes said they had never seen that level of jaundice before.

Later, I was moved to the general hospital. Treatment continued but there was no improvement. Finally, I fell into crisis. The pain was so excruciating that no injection seemed potent enough. When scan was done, it was discovered that one of the babies was dead. Then I was referred to Federal Medical Center, Abeokuta. The pregnancy was then 32 weeks old. The doctors at FMC carried out series of tests and said that if they should operate on me, I would not stop bleeding. Meaning that I had to give birth to the dead and living babies by myself in spite of the crisis. And the dead baby was breech.

Did I remember to say that I had been transfused eight times at the two previous hospitals? Labour was induced. All the while I laboured, my PCV kept on reading 16%. (My PCV was checked every thirty minutes within the 12 hours of labour). I eventually gave birth to the babies. The dead twin was a girl and the living one a boy. The living twin was taken to the Neonatal Unit. After the delivery, they gave me two more pints of blood. The third day, news got to me that the twin boy too had packed. I felt as though my life was going to end but what could I do? I convalesced I and I returned home.

I got pregnant again and had a miscarriage. I continued to get pregnant and continued to have miscarriage up to the seventh time. Each time I had a miscarriage, I had a serious bone pain that left a memento. The cracks in my lower teeth, the numbness of my chin till today, the peeling off of my lower lip at intervals are all a memento of the bone pains I had during the miscarriages. I can never find the right words to describe those pains.

I went from one hospital to the other seeking solution to the problem of miscarriage. My husband and I spent a lot of money. No doctor could name the possible cause of the miscarriages. I read online about prophylactic cerclage ( I am unsure of the spelling) and suggested it to my doctors, but they kept on saying that that was not the solution since the miscarriages always happened at the first trimester. I was placed on an injection, the name of which I can’t remember now, but it did nothing to prevent the miscarriages. Each time I was pregnant, I was on complete bedrest yet the pregnancy still came down.

Then I gave up trying to become a mom. The decision was easy for me to make because my husband was not desperate. He kept on telling me that with or without a child he would never stop loving me. And his family? They are the best. My mother in-law would call and pray for me. There was never a day she complained about my childlessness.

I wanted to do something with my life if I could not have a child. So I went in pursuit of a full time Master’s degree at UI. People told me that that decision was not a wise decision considering the fact that I had a full time job, a health challenge and the distance between Ilaro and Ibadan is about five hours. But my husband and parents stood by me. I travelled from Ilaro to Ibadan almost on a daily basis. And UI’s Master’s is very rigorous. I remember one of my professors telling me to quit because of my health, but I was determined.

My health failed a lot. Quite a number of times I wrote my assignment in Jaja (school clinic). I would go to the clinic with my laptop computer, doing my assignment while being given IV fluid or being transfused. Sometimes I sneaked out of the clinic to go to the department and submit my assignment. If I was at Ilaro when my crisis started I would still travel to Ibadan. At the same time, I managed to do my best at my place of work since I was the only English teacher in the school ( That time, I even got an award as the best teacher in humanities).

I was writing my project when I discovered I was pregnant again! I wasn’t excited. My gynecologist confined me to the bed in the hospital. My project was halted!

Then the bleeding started again. Nothing that was done could stop it. Scan was done everyday to check for foetal well being. The scan kept on saying that the babies were fine. Yes, It was another set of twins!

Things went on like that. Then one night when the pregnancy was 11 weeks old, the amniotic fluid burst. In the morning I was sent for another scan which revealed that the amniotic fluid was adequate. My doctor was not satisfied. He said the fluid couldn’t be adequate with the volume of water I lost the previous day. He sent me to another place and it was confirmed that fluid was adequate in the two sacks.

Later I developed high BP. My doctor said that there was a possibility of preempclamsia. What ever that meant, I knew it wasn’t good. At 29 weeks, the doctor moved me from his private hospital to FMC Abeokuta. He himself was one of the heads of gynecological unit at FMC and he was my consultant. I was to be under close observation in the ward till the pregnancy would be around 36 weeks when I would be operated on.

At FMC, we spent a lot of money as tests were carried out everyday. And I was transfused a number of times in spite of the fact that I was on a daily dose of ugwu leaves. Quite a number of times, I became so anemic I was on oxygen. Blood and protein were discovered in my urine. My husband and parents frequented Abeokuta from Ilaro, running around to get money.

Then on 1st February 2016, my consultant came to the ward with his team. They tested me and sensed that something was wrong. They brought a bedside scanner, did a scan and discovered that one of the babies was dead. Then I was sent for an actual scan and it was confirmed that only twin B was alive. They had to do a CS and bring her out immediately, otherwise we would lose her too. The pregnancy was just 32 weeks at the time and my husband and parents were away looking for money. We had spent to the tune of 1 million naira.The nurses quickly supplied everything I would need in the theatre on credit and I was rushed to the theatre. Before my people returned my baby and I were out of the theatre. I to the Intensive Care Unit and She to the Neonatal Unit. When I came out of the ICU the third day and went to the NNU to see my baby, I was aghast at what I saw in the incubator. She was not bigger than a lizard, weighing only 1 kg. She could not feed for the first three days and when she started feeding the fourth day, it was 2.5 ml of breastmilk passed through her nose with an NG tube. Her cylinder of oxygen was as tall as I was because she couldn’t breath by herself.

I was discharged but my baby was not yet discharged so I had to hang around in hospital premises in spite of the fact that I was not fine and my edema got worse after I had the baby. Often and again I fell into crisis but I would still manage to climb the staircase to the NNU to supply breastmilk for my baby.

Her bilirubin kept on rising, which means she had jaundice. And they did Exchange Blood Transfusion for her twice – the blood in her body was flushed out and another one was given to her. Inside the incubator, she was under phototherapy and her eyes were plastered.

When she was nine days old, FMC nurses went on strike and all the babies in the NNU were discharged. My baby was given to me and I didn’t know what to do. It was already getting dark and UCH was far, so we took her to Sacred Heart Hospital. At Sacred Heart the third Exchange Blood transfusion was done for her. After six weeks, when she weighed 1.5 kg, we were discharged. She has since been growing healthy and strong. My major worry was that the jaundice could affect her brain but glory to God, today my daughter, Moset’Oba Oladejo, is a super intelligent child.

But in my own case, I’ve been falling in and out of crises. Staying admitted and not being able to live a normal life, or even have the time to enjoy wonderful moments with my husband and daughter.

The doctors say my best chance is a bone marrow transplant and I need up to 15 million for it.
Please, I’m asking for your support. Nothing is too small.