Pregnancy, Motherhood & Accepting the Limits of Sickle Cell
Pregnancy for me was an exciting time. It did not start with the usual morning sickness and discomfort that most people complain about. In fact, I did not even know I was pregnant until my 13th week.
I was partying, working jobs, and just living my life when a major crisis hit me after a terrible breakup. The doctors began to run out of options, so they opted for a full-body scan.
The result was shocking to me. 13 weeks pregnant? Like now? I’m pregnant now? The shock was because I tried for 2 years to have a child, and nothing happened. Just when I started putting my life back together, exactly 1 month after the relationship ended, here is the baby I was so desperately looking for.
Sharing the joyful news
I needed to start adjusting to make room for my little bundle of joy. Even though I was thrilled with joy, my concerns would steal my joy from time to time. I later mastered the courage to tell my parents and the man involved. My dad wasn’t so happy, but he understood why. My ex decided he didn’t want to be a part of our life, and we didn’t push it.
The next thing that started bothering me was my condition as an SCD patient.
Would I be ok? What is the next thing to do? Baby shopping? Where can I find a sickle cell specialist in Ghana? I called all the doctors I knew to hear and compare solutions to see which one is best. And, of course, I couldn’t resist the baby fever.
Joys and worries
Amazingly, my pregnancy journey was very smooth in the beginning: no morning sicknesses or funny habits. I ate really well, and I was enjoying being pregnant.
Even though I did my best to live in the moment and not worry, I couldn’t help it. I tried focusing on other things like the baby, maternity shoot, and beyond just to take my mind off my negative vibes. The moment my baby bump showed at 7 months, I decided to have my maternity shoot.
For some reason, my instincts kept telling me to be quick with my plans. I could feel that something was about to happen, and no matter what I did, the feeling would not go away.
I was right.
Exactly 2 weeks after my photoshoot, I started having complications. My lower abdomen was so weighed, I started feeling pains. What started as a minor hitch turned into a crisis. Before I knew it, I went into a coma.
I spent 9 days in a coma, and just when I was slipping out, the crises came back. Out of fear that both my baby and I may lose our lives, an emergency C-section was ordered.
My little princess
My little Princess was taken out premature and had to be at NICU for a few days. She lay there so tiny and tired already. Tears filled my eyes without effort. Amazingly, she got into shape quickly, and we went home.
By the time I was ready to go home, the bill was huge and heavy.
Managing my sickle cell
Even though I was better and discharged, the pain was not entirely gone. I tried breastfeeding while taking my medications. I would skip strong pains medications even though I needed them. Eventually, My doctor advised that I stop breastfeeding so I can take my medications. The drugs were too strong and not safe for my baby, so we had to turn to baby food. This, by the way, is very expensive.
I love being a mother. In fact, it's one of the things that keeps me going. Unfortunately, sickle cell will not give me the space to give my best as a mother.
Eventually, my parents and I decided that she should stay with them in the north so I can get back to my life in Accra, especially because she's not breastfeeding.
The societal implications
People called me names, saying I'm a bad mother for sending my daughter far away. Others made their own conclusions, and a few people still don’t talk to me. The reason I am not bothered is, as a mother, there is also the need to be strong enough to make the hard decisions not caring about people’s opinions. I know that is the best option for my child, and I’ve made peace with that.
Adjusting and accepting my disability
As I write this, her second birthday is in two days. I’m down with a crisis and can barely walk. As a mother with SCD, I always have to adjust to things like this and learn to be ok with the fact that I can’t give a 100% to my child because of my disability.
Until I came to accept the fact that I’m not a regular mother, the thought that I couldn’t be there all the time for my child haunted me day and night. Now that I’ve accepted it, I still want to try against all odds.
Motherhood is a handful on its own. How much more being a mother with an invisible illness like SCD? As unbelievable as it may sound, it is totally possible, and I am a living testimony to that. No need to sugarcoat things - it won’t be easy. But if I can do it, so can you.
Let go of the guilt that you can't be at 100% because of the challenges of SCD. You are not at 100%, so there is no way you can give what you don't have. Give what you can, and applaud yourself for it. No matter how insignificant you think it is.
Have you taken our Sickle Cell In America Survey yet?