“THEY say that love is blind, they say that love conquers all, but in my case love could not save my four children from the agony and death of sickle cell disorder,“ says Mrs Tawa Edirin, a Lagos-based business woman.
“ My ex-husband and I knew that we both carried the ‘AS‘ genotypes. But, because we loved each other so much, we turned deaf ears to our concerned relatives’ warning and ploy to stop our marriage. We got married in1996.
“ We had, and most unfortunately, lost four children to sickle cell disorder within 10 years of our marriage. It was a traumatic experience and period for us and at that point we realized that love was not enough to keep our children and our union alive.
“Sadly, each child took the ‘S’ from each of the parents and ended up being ‘SS’ carriers,” Edirin says amid tears.
According to her, the love birds were forced, painfully faced with reality, to end the marriage in 2007.
“I got married again in 2010 to an `AA` carrier after rigorous screenings, and I now have two children that are free from the ‘s’ debacle and are both quite healthy, I have learnt the hard way” she says with a wry smile.
Also narrating his plight as an ‘SS’ carrier, a Lagos-based cleric, who simply wants to be known as Pastor Damian, recalls that his prayers and faith as a `Vessel of God` could not stop the condition of his children.
“Sickle cell disorder has robbed me of my children and happiness, it has taken away all I have and turned my family to beggars.
“This disorder killed two out of my five children and it is still threatening the lives of the remaining three— because they all carry the ‘SS’ genotype.
“I cannot continue to watch them suffer and die for what my wife and I caused as a result of our ignorance. I have sold all that I have to make sure that they stay alive,’’ he laments.
Damian‘s trauma started in 2001 when his first child died at the age of 10, while another child died nine years later in 2010.
He says that he had prayed and fasted endlessly but the situation had remained stagnant; he also fears that the condition of his remaining three children remains critical.
That is just two of many Nigerian parents undergoing similar harrowing experience. It is estimated that more than five million people in the country are suffering from the genetic disorder.
But the circumstance is a worldwide incident. The World Health Organisation (WHO) says about five per cent of the world’s population carries the trait genes for haemoglobin disorders, mainly sickle-cell disease.
The simple and only way of arresting the situation is for couples with strains of the ‘S’ gene to avoid making babies. In essence, avoiding marrying a spouse with a trait of the disorder will save the world the agony of breeding more ‘SS’ carriers.
According to Dr Bamidele Iwalokun, a medical researcher with the Nigerian Institute of Medical Research (NIMR),Yaba-Lagos, haemoglobin disorders are genetic blood diseases that emerge due to the inheritance of mutant haemoglobin genes from both parents— generally healthy adults.
Iwalokun says sufferers have no visible symptoms, but periodically experience severe pain and are also highly prone to anaemia because the blood cells break down after only 10 to 20 days, rather than the usual four months.
“A person can only inherit sickle-cell disorder if both parents are carriers of the genetic trait, and then there is a one-in-four chance of giving birth to an affected child.
“So, it not a question of faith or love because the facts are there and had been scientifically established, “ he says.
The WHO notes that over 300,000 babies with severe haemoglobin disorders are born each year, adding, however, that the health burden of haemoglobin disorders can be effectively reduced via management and prevention programmes
However, Dr Alayo Sopekan, a Desk Officer (Sickle Cell Disorder) in the Department of Public Health of the Federal Ministry of Health, Abuja, says that over 40 million Nigerians are healthy carriers of the sickle cell gene.
Sopekan says that Nigeria has the largest population of people with sickle cell disease in the world with around 150,000 new babies born with this serious condition every year.
“Nigeria, by the virtue of her population, ranks first as a sickle cell endemic country in Africa with annual infant deaths totaling around 100,000— eight per cent of infant mortality in the country,’’ he says.
Tales of people suffering from the sickle cell disorder will definitely stir up a deep sense of compassion and their traumatic experience has somewhat compelled the Federal and State governments to set up intervention programmes to alleviate their suffering.
This is partly because sickle cell anaemia is one of 10 major non-communicable diseases causing significant disability, morbidity and mortality in the country.
Besides the government, churches and non-governmental organisations are also carrying out structured advocacy programmes, counseling patients and intending couples.
In some churches, intending couples are not even allowed to wed without tendering results of medical tests confirming their genotypes and any trace of the “S” gene will mean refusal to join the couple in holy matrimony.
Mrs Nike Opalemo, the founder of Nike Opalemo Sickle Cell Foundation, says a time will come when children living with sickle cell disease will start suing their parents for negligence.
“Even with all the strong awareness on the disorder, many couples still go ahead with their marriages in the name of love and faith, expecting miracles to happen.
“One day, these children will rise and will sue them for bringing them into the world and making them to suffer so much pain.
“This is because they suffer stigmatisation, job discrimination, frequent illness, depression, lack of access to standard treatment due to financial constraints and frequent blood transfusion,’’ she says.
Opalemo, nonetheless, urges people suffering from sickle cell disorder to go for regular checkups, eat balanced diets, have adequate bed rest and adopt sound hygienic practices, so as to enable them to manage the disorder effectively and live longer.
Contributing, Mrs Doris Gbemiloye, the Executive Director, Genotype Foundation (GF), says the campaign against sickle cell anaemia should be expanded to cover pre-secondary schools, as there is a growing need to sensitise more pupils and students on the need to know their genotype.
“When they grow up, they will be able to make the right decisions about their spouses, they will be able to appreciate the fact that marriage is not all about love,’’ she adds.
Besides, Gbemiloye tasks the government to increase funding for research on sickle cell disorder, while upgrading existing facilities used in treating people living with the disease.
Statistically, Dr Yewande Jinadu, says since the sickle-cell disease is an incurable and inherited genetic disorder, people who have the ‘AA‘ genotype should marry ‘SS‘ or ‘AS‘ carriers, rather than running away from them.
Jinadu, the Medical Director of the Federal Medical centre (FMC), Ebute Metta, Lagos, notes that marriages between ‘AA’ and ‘AS’ or ‘SS’ carriers will reduce the chances of having a child with the ‘SS’ genotype.
“In our society today, even with the high level of education, most people with ‘AA’ genotype tend to run away from ‘AS’ or ‘SS’ carriers when it comes to marriage.
“We need to re-orientate the public on how this can reduce the chances of having an ‘SS’ child or even reduce the number of children born with this disorder.
Mr Ebenezer Adeleye, the Programme Coordinator at the Sickle Cell Foundation, Nigeria, says another way of addressing the challenges of sickle cell disorder is through a Prenatal Diagnosis of Sickle Cell Disorder known as Chorionic Villus Sampling (CVS).
Adeleye says that the test cost N230, 000 and many Nigerian couple had been patronising the programme.
According to him, it’s a type of test done early in pregnancy from about eight weeks to determine the genotype of an unborn child.
“We started the programme at the Sickle Cell Foundation in 2004 in Nigeria, in order to meet a rising demand.
“ This is a test that can be done on the baby before it is born, to see whether it is affected by a particular disease or disorder or not.
‘If it is affected, the couple may decide to terminate the pregnancy and try again for an unaffected child or may choose to continue with the pregnancy and prepare their minds for its birth and consequences.
“ If the baby is not affected, then the pregnancy can continue normally.
“Remember that, for most couples at risk for sickle cell anaemia, such as ‘AS’ versus ‘AS’) there is a three out of four chance of a healthy child in each pregnancy”.
Adeleye says there is need to create awareness and enlighten the public on the benefits of the programme to reduce the burden of Sickle Cell Disorder in the country.
However, the consensus of opinion on the disorder is that, though a few ‘SS’ carriers live to ripe old age, it is better avoided than being pampered and propagated.
“Apart from abortion being illegal in Nigeria, how many couples can afford N230,000 for CVS—to test the fetus to ascertain its status?” asks a medical doctor who chose anonymity.