“It’s strange how the worst day of your life often starts just like any other. You might even complain very quietly to yourself about its ordinariness. You might wait for something more interesting to happen, something to improve your routine, and just when you think you can’t bear the monotony any longer, something comes along that shatters your life to such degree, you wish with every cell in your body that your day hadn’t become so unordinary.” – Joanna Cannon
2020 has been a terrible year so far and I know I am not alone in thinking this. After surviving a coronavirus pregnancy, and successfully giving birth in the middle of the crisis, I didn’t think my year could get any worse. Unbeknown to me, the worst was yet to come.
May 21, 2020, was the day my life changed forever. At around 10 am that morning, I received a call that my gut instinct told me would come, but fervently prayed wouldn’t be the case.
Two weeks prior, the health visitor had come to our home to take a blood sample to test my son for various genetic disorders, including sickle cell anaemia. There was a 25% chance my son could have the condition because both myself and my husband are carriers of the sickle cell gene.
I was offered an amniocentesis when I was around 16 weeks pregnant to find out whether or not he had sickle cell anaemia, but I turned it down because there was a small risk of a miscarriage. Besides, I had made up my mind to keep the pregnancy regardless of his sickle cell status. You would think that decision would have prepared me for the phone call telling me my son had the condition, but it didn’t.
At first, I felt a sense of relief that I finally knew the result of the tests after two weeks of anxiously awaiting them. Soon after, fear and extreme guilt took over. I was petrified for my son. I have witnessed members of my extended family suffer severe pain and frequent hospital visits from the condition. I’ve also seen how it affects their quality of life and mental health. I couldn’t bear to think that my son would go through the same thing. It was then the endless crying started.
There were so many thoughts running through my mind. Would he hate me for bringing him into the world when he is older? How would I know if he is pain and would I be able to help him feel better? Would I be a good mother to him? Would he have a good quality of life? Would I be able to keep him safe? Did I make the correct decision by keeping the pregnancy? Was I selfish to keep the pregnancy?
It didn’t help that when I told a close member of the family the news, the first thing she said was ‘it is your fault, you didn’t pray enough’. I couldn’t believe that those were the first words that came out of her mouth. I hoped for her to say everything would be okay, or if she didn’t have the words to give me a hug at least. Instead, she said the worst thing that a mother or in fact anyone else could possibly to a mother after receiving such devastating news. Needless to say, my relationship with her is tainted forever. She did apologise, but I don’t think it is something I will ever forget.
MOVING ON FROM THE DIAGNOSIS
After about a week of crying, I shared the news with two of my closest cousins who have sickle cell anaemia. One of them broke down and cried with me, she understood my pain. She never wanted anyone to experience the pain of sickle cell crisis. But then she lifted me up. She told me to see it as a positive. In addition to being a biomedical scientist, I was well versed about the condition. After all, my dissertation for my first degree in 2004 was on the treatment options for sickle cell anaemia. Moreover, I had the first-hand experience of witnessing the impact of the condition on her and I knew some of the things that needed to be done to prevent or at least reduce the frequency of crisis. As she said, I was better off than most people who had never heard of the condition and would know how to handle it better. She was correct in many ways, but dealing with sickle cell from a sibling perspective, is so much more different than dealing with it as a mother.
I allowed myself to mull over what she said and I remembered that back in 2004 after completing my degree, I made a pact with God to research into sickle cell anaemia and spread more information about it. I wanted to either work as a research scientist in that area or even volunteer in a sickle cell charity. However, when I was ready to do my PhD, I couldn’t find a good supervisor to work with and I got enticed by other projects and forgot about it.
I wonder if my son’s diagnosis was the way God chose to remind me about my pact? Or was it just my mind looking for coping strategies to deal with the situation. Either way, I have decided that this is my calling and in as much as it will be a way to give my son the best care possible, it will keep me sane and perhaps help other mothers who find themselves in the same situation.
TURNING A NEGATIVE DIAGNOSIS INTO SOMETHING POSITIVE
I have read so many scientific articles about the condition, including treatment and palliative care so I know the basics of what needs to be done. There is some information about how nutrition plays a role in the number and severity of sickle cell crisis, but it is ridiculous that nutritional plans are not incorporated in the management plan for those with the condition.
I am currently studying a masters programme in human nutrition to become a registered nutritionist. I will be fully qualified by October 2020. My initial plan was to use my knowledge to teach the black community how to eat healthier diets, lose weight and prevent chronic conditions. This has not changed. However, my main focus has shifted to helping people with sickle cell eat healthy diets that could potentially reduce sickle cell crisis, prevent vitamin and mineral (micronutrient) deficiencies and help them thrive. People with sickle cell tend to experience delayed growth in childhood and present with numerous micronutrient deficiencies that may have a negative impact on their general wellbeing and in the number and severity of crisis they experience. I also plan to help mothers improve their diets to keep them healthy, and more able to deal with the demands of parenting and life in general.
I am concerned about the future, but I have decided to use my science and nutrition background to empower me to give my son the best quality of life possible. If you are a mother experiencing the same emotional trauma as I am, I hope that my upcoming posts will empower you and help you realise that your child may have sickle cell but sickle cell doesn’t have them. This may not be an easy journey, but I have no doubt that I (we) will do everything in my capacity to keep my son well and help him achieve everything he desires in life.
HAS YOUR CHILD OR CLOSE FAMILY MEMBER BEEN RECENTLY DIAGNOSED WITH SICKLE CELL ANAEMIA? WHAT WAS YOUR INITIAL REACTION AND WHAT ARE YOU DOING TO COPE WITH THE NEWS?