Mr. and Mrs. Paulinus Ugumba had a promising marriage, since they were joined together as husband and wife in 1999.The union had produced four children: two boys and two girls. But life took a twist for them in 2008, when two of their children fell sick almost at the same time. The ailing children, Sunday, born in 2002, and Juliet, in 2004, are the second and third born respectively.

The couple took their son to a nearby clinic in Itire, a suburb of Lagos, where he was admitted after several days of indescribable pain the boy endured, with his parents having no clue about his condition.

There, it was diagnosed that Sunday has sickle cell anaemia, but the parents refused to believe the doctor, rather believing that their son had malaria. They were, however, referred to the Lagos University Teaching Hospital (LUTH). The result of the test at the tertiary hospital also confirmed that Sunday has sickle cell. Consequently, he was admitted and was discharged one week later.

Unfortunately, two weeks after, Juliet, who is the third of the siblings, fell ill and was rushed to LUTH as the couple had seen similar symptoms they saw in Sunday. Again, Juliet was diagnosed with sickle cell anaemia.

Ugumba and his wife were advised by the doctors to know their genotype. Filled with fear and ignorance, Mrs. Ugumba, who claimed to be a born again Christian resisted, saying that nobody had ever undergone such test in her family. But after much persuasion she and her husband had the test and the result showed that both are AS (carriers).

The couple are faced with stark realities of life as they contend with the dreaded and expensive ailment and are burdened with frequent visits to hospital because of their ailing children.

Ugumba told National Mirror, “It is an agony to have such situation in the family. I can’t even explain it. We have spent all our savings managing the crises because we buy drugs always just to keep these children alive. I feel so sad whenever I see my children in such indescribable pains.

“Doctors and health experts have been giving us a lot of counseling on its management, but I realised that if I and my wife had done the genotype test before we got married, this wouldn’t have happened because we would have known that we are both carriers and are incompatible in marriage.

“In as much as I look up to God for His miracles I advise intending couples to know their genotype before saying ‘I do’ to each other.”

Similarly, Johnson Egwuatu, a Lagos-based businessman proposed to her long time girlfriend, Jane, in 2010 and they began making plans for their wedding when the unexpected happened. As part of the requirements by their church, the pastor asked them about their genotype status. They got tested and the result showed that both of them were carriers of the sickle cell gene.

It was a painful experience, when Johnson broke the news to his beloved girlfriend that both of them could notmarry following the advice from the pastor.

Johnson heeded the advice but his mother who had admired the girl because of the cordial relationship between their two families thought otherwise, and insisted that the son must go on with the marriage plan.

He narrated his experience thus: “Jane knew very much that I loved her but I couldn’t help the situation. She cried when I told her that both of us can no longer marry. We are from the same village in Anambra West Local Government Area, Anambra State. My mother wanted me to continue with our arrangement, but I told her it was no longer possible. My refusal caused misunderstanding between us.

“She was interested in the girl’s background and because of the long cordial relationship that existed between the two families, but I was interested in my future and the future of my unborn children. I have seen families who are victims of sickle cell anaemia and I don’t wish anybody such terrible experience. I learnt that it is an incurable ailment, so why should I be blindfolded by love to put in such a terrible condition?

“May be, because of mother’s lack of formal education, she doesn’t believe that genotype can be a major determining factor in marriage. She told me severally that she and my father, who is now late, didn’t do any test before marriage and they were able to raise nine healthy children that are all grownups now.”

Sickle cell anaemia is an inherited form of anaemia, a condition in which there are not enough healthy red blood cells to carry oxygen throughout the human body. It is a disease of the blood and it is commonly associated with the black race. It is derived when both parents have the sickle cell trait, AS.

Under normal circumstances, the red blood cells are flexible and round, and they move easily through the blood vessels to carry oxygen to all parts of the body. In people with sickle cell anaemia, the red blood cells become rigid and sticky and are shaped like sickle or crescent moons. These irregular-shaped blood cells die prematurely, resulting in a chronic shortage of red blood cells.

People with sickle cell anaemia have two genes for the disorder- one from each parent. They usually show some signs and symptoms after four months of age. Some others have mild symptoms, while others have severe symptoms and need frequent hospitalisation.

Some of the signs and symptoms of full-blown sickle cell include: hand-foot syndrome (swollen hands and feet in babies), anaemia, periodic episodes of pain called crisis, jaundice, frequent infections, stunted growth and vision problems.

Oluwatoyin Adesola is another sickle cell sufferer and has experienced such crisis for the past 48 years of her existence. “I was born with the Sickle Cell Anaemia disorder, although it was not realised until I was about 18 months following my admission into Lagos University Teaching Hospital (LUTH) for anaemia and localised joint pains in my legs. This disease was the cause of subsequent complications, which incapacitated me in various stages of my life,” she said.

Surprisingly, Oluwatoyin come from a family of medical practitioners – her father being a surgeon, while the mother is a nurse – but she became a source of worry and stress to them.

“In my case, both parents have the AS genotype which I took the SS genotype, while interestingly my older sister (the only sibling), Foluke, has the AA genotype.”

There is a fading age-long superstitious belief in most African societies of mysterious children, otherwise called Ogbanje in Igbo land and Abiku in Yoruba land that die and come back mysteriously to their homes or families. In some places, the sicklers are believed to be Ogbanje or Abiku.

National Mirror found out that unfortunately in Nigeria, some churches have compounded the woes of many in their desperation to win adherents. While some churches discourage couples with AS genotype from getting married because of the known sickle cell catastrophe, which will result from their wedding, others would conduct such weddings, thereby engaging the couples in potentially dangerous ventures. Most of the churches claim to be able to miraculously change the genotypes with faith in God.

A recent report, however, revealed that about 3.4 million Nigerians are suffering from sickle cell anaemia, while about 40 million Nigerians carry the gene of reproducing sickle cell patients.

Disclosing this at the launch of the Media Initiative Programme and Celebration of the World Sickle Cell Day tagged “Know Your Sickle Cell Status, Eat Right” last June, Head of the sickle cell unit of the Jos University Teaching Hospital (JUTH) Dr. Silvanus Okpe, noted that “the burden of sickle cell anaemia is enormous.”

Lamenting the rate of superstitious belief by Nigerians, Okpe said, “In this contemporary world a lot of Nigerians have not come to terms with what this sickness entails. They still attach some traditional beliefs to it; therefore we have to take the awareness to the masses especially young people. This is because even those who are aware of the effect of this illness don’t come for screening.”

Okpe stressed that about 30 per cent of out-patients who visit JUTH daily live with the sickness while a lot of children die of the illness daily.

To reduce the devastating effect of sickle cell disease in Nigeria, the Federal Ministry of Health (FMH) launched a campaign against the age-long superstition in early 2013.

Rev. Fr. (Dr.) John Obasi, a medical personnel with the Federal Medical Centre (FMC) Abakaliki, said at a community mobilisation control programme on sickle-cell disease that because of insufficient information on the cause-effect relationship of the condition, it has continued to deal fatal blow to many families and marriages, thereby leaving many families as death factories, couples miserable and marriages threatened.