Sickle Cell and the Spirit Child
My older brother, Brown or “Brownie,” as we called him, inculcated in me two things as young boys – a love for music and a love for reading. The music we loved at the time was the Congolese sound of the likes of Orchestras Bella Bella, Lipua Lipua, Empire Bakuba, and singers like Verkys Kiamuangana Mateta and Tabu Ley among others. With respect to reading, Brown helped nurture my love for reading by passing on to me the literature books they were assigned to read. There were two categories of books – Penguin Classics and the African Writers Series books. By the fourth grade, I had read many of the classics and just about every AWS book on which I could lay my hands.
One of my favorite books, which I later had to read for my own literature classes, was Chinua Achebe’s Things Fall Apart. I appreciated its great writing as well as its tragic plot. In particular, Ekwefi, the second wife of Okonkwo, the main protagonist in book, had nine children die in infancy before she bore Ezinma, her only child to survive. The child was considered an ogbanje - an evil “spirit-child” born to a family only to die in infancy, torturing the family cycle in rebirth and early death. Even as an adolescent, the story moved me deeply and I felt for Ekwefi and her serial loss of children.
I have not revisited Achebe’s writing in a long time, but after learning my own children’s sickle cell diagnosis, I reflected on those multiple deaths and wondered if it was not a case of different children born with sickle cell disease. Without the benefit of knowledge in modern medicine, African communities could only ascribe unknown phenomena to spirits. Among my own Luhya people in Kenya, a family, and more specifically, a woman is said to be cursed if there is a pattern of infant mortality.
Unfortunately, though we live in the information age of the 21st Century, in practice we are not far-removed from that era of uninformed traditional beliefs. Studies show that every year, over half a million children will be born worldwide with SCD. Many will not make it beyond the age of 5-years. The primary driver of these deaths is that members of vulnerable communities, who are of child-bearing age, are unaware of their sickle cell status. This ignorance is not limited to people in villages with limited education. Well-educated individuals are just as oblivious of their status - resulting in offspring having either the sickle cell trait or full-blown SCD. This pattern must be broken. All members of vulnerable communities should get tested to know their sickle cell status so they can make informed decisions about family and the children they would bring into the world. We owe it to our children – not just our own pleasure. Let’s play our part in curtailing the upsurge of this debilitating illness.
