By Adaobi Tricia Nwaubani
Mrs. Ezebuike is the author of ‘Coping with Sickle Cell~A Mother’s Own Story’
Kicker: More Nigerians are protecting their potential children from sickle cell
Jackie Onyemelukwe was in her final year at Imo State University when her boyfriend, Chuka, proposed. They began making plans to get married, but there was an unexpected pitfall. The pastor of their church asked them if they were aware of each other’s genotypes. That was a prerequisite for their wedding. Jackie and Chuka, who had already been dating for over a year, then went to get tested.
Chuka waited until after Jackie’s final exams before breaking the news to her. Laboratory results showed that they were both carriers of the sickle cell gene. They called off the wedding and broke up. “At first, I wanted to go ahead,” Jackie said, “but Chuka told me to imagine how much more painful it would be if we lost a child to sickle cell disease in future.”
A recent WHO report estimates that around 150,000 of the children born in Nigeria every year are affected by sickle cell anaemia. For this disease to occur, an abnormal type of haemoglobin known as sickle haemoglobin, or S, has to be inherited from both the mother and the father, leaving a child with two sickle cell genes.
Children like this are more prone to infection. Their red blood cells are fragile and rupture easily, leading to anaemia. Their irregular, sickle-shaped cells can also block blood vessels, causing tissue and organ damage and severe pain. The majority of people with sickle cell disease are of African or Caribbean descent, and one out of every four Nigerians is either a sufferer or a carrier of the S gene.
That’s why so many religious organisations in Nigeria now make it compulsory for engaged couples to undergo genotype testing prior to their weddings – like Jackie and Chuka.
Pastor Shola Kolade of the Vine Branch Charismatic Church in the city of Ibadan explains: “we believe that genetic counselling can end sickle cell disease in just one generation.” His church doesn’t only insist on genotype testing: it requires engaged couples to disclose their HIV and hepatitis status, and even their blood types, to each other as well.
Amaechi Ezebuike agrees that compulsory genotype testing could help eradicate the disease. At the age of 22 , she left Nigeria for Germany to be the wife of Ozurumba, a medical student whom she had never met. The people of his home village, Amucha, had raised the money to send him abroad to study. When the time was right, they felt it their responsibility to send him a wife too.
Between 1972 and 1984, Mrs. Ezebuike and her husband had six children together. Their two sons and one of their daughters eventually died of sickle cell anaemia. But the couple had no idea, until their children started falling ill, that either of them were carriers of the sickle cell gene.
“My third daughter, Nneka, was two years old when she started running a very high fever which my husband who was a seasoned medical doctor, couldn’t control,” she remembers. “After a laboratory genotype test result, it became clear to us. We then screened all our children and found out that two more were SS. We were devastated.”
Mrs. Ezebuike has written a book about her ordeal, and now believes that a man and woman who are both carriers simply should not get married. “They should also bear in mind that it is not all about them,” she insists. “The kids from this union will blame all the excruciating pain they’ll go through on their parents.”
Thirty-year-old Rabi Maidunama is a sufferer of sickle cell disease. She has often had to leave Nigeria for medical treatment in England, and she has lost a sister to the disease. But she does not regret her parents having met and married. “What I am has made me who I am,” she told me. “Sometimes, God uses people to help others.”
The people Rabi is helping include 2000 children currently registered with her Maidunama Sickle Cell Foundation. It doesn’t just provide treatment, but also educates people in northern Nigeria about the disease, and encourages them to undergo genotype testing before marriage. She says that sickle cell is rampant in the region: “Many men are divorcing their wives because of the disease. They believe the women are somehow responsible for their children constantly falling ill or dying.”
Rabi believes that her parents, in their time, acted out of ignorance. Like Mrs. Ezebuike, they had no idea that they were passing on a deadly gene to their children. “But people of today have no excuse,” she said. “Sickle cell is 100 percent preventable.”
Today, Chuka is married to someone else. Jackie was even a guest at his wedding – but still has yet to find her own ‘Mr. Right’. In the meantime, she’s cautious about facing any future heartbreak. “I always ask every potential suitor I meet about his genotype,” she says.
This piece was first broadcast on the BBC World Service Programme, From Our Own Correspondent. http://www.bbc.co.uk/programmes/p014hx5y
