It is a dubious record that no one should be happy about- Nigeria accounts for the highest yield of the sickle cell sufferers in Africa. That about 150 Nigerian children are born with sickle cell disorder (SCD), every year, is dreadful news. It may be argued that this goes along with the fact that Nigeria is the most populated country on the continent. But when bounced against the fact that the country has better developed medical facilities and a proportionally higher literacy rate than most nations in Africa, it becomes a little difficult to understand why the disease is still prevalent in Nigeria.
The World Health Organisation puts the prevalence estimates of the disease in Nigeria at 20-30 percent, whereas in North and Southern Africa, the range is 10-20 percent.
Generally, sickle cell disorder is a medical condition that describes a bunch of inherited red blood cell disorders. Sufferers have malfunctioning haemoglobin in the red blood cells. Unlike HIV/AIDS and other infectious diseases, sickle cell disorder is transferred exclusively from carrier parents to an unborn child. Scientifically, several types of Sickle cell have been identified.
They include HBSC, Thalassemia and HBSS (Sickle Cell Anaemia.) The commonest is the sickle cell anaemia. Experts say this is the most severe and prevalent in Nigeria. Many Nigerians have heard of the disease or even known someone who has it.
The pain, inconvenience and economic implications of living with the condition are well-established. Again, the life expectancy of sufferers is short and increases the pain of losing loved ones as some of them die years after their 10th birthday when they are thought to have escaped the danger lines. In developing economies such as ours with an already very high infant mortality rate-many of whom die before their fifth birthday from killer diseases such as malaria, pneumonia, diarrhea, prematurity and asphyxia – it is double-jeopardy
It is heart-warming that research efforts have yielded some therapeutic palliatives that have helped to ameliorate the pains of persons living with the condition. Yet, progress in combating this monster has not been far-reaching. Many non-governmental organisations, government agencies, clubs and other associations have been lending a voice to the efforts to contain the disease through training of health workers on genetic counseling, awareness campaigns and provision of clinical services cum psychological support to sufferers and parents.
Unfortunately, these fall acutely short as efforts are not channeled towards preventing the occurrence of the disease or at least reduction of its incidence in Nigeria. Agreed, these noble organisations offer the interventions earlier listed but they have not been enough as with sparse government support, they are largely limited in scope and cannot cover the growing population of persons living with sickle cell anaemia. The first and most important means of halting the disease from leaving a footmark is to avoid tempting the devil.
Awareness creation is not enough. Advice on making lifestyle, nay life-long decisions is crucial. Rather than have a generation that may not be weaned on the wings of this painful disease, it is important to nip this anomaly before it happens. Health workers and sickle cell activists should go beyond the call of empowering would–be parents with information on SCD to enable them make informed decisions. Would-be parents should go for a test to know their genotypes status and whether their genes are capable of becoming fertile grounds for the disorder to manifest in their offsprings (in the case of AS+AS or AS+SS), should be encouraged to discontinue their plans to marry and procreate as the probability that 1 out of every four children they would have may be born with SCD.
Suggesting that selective mating has not worked anywhere else as some sickle cell activists are wont to, should not be the argument. Although, prospective couples should not be compelled to choose what path, medical experts and genetic counselors need to sound the note of warnings on the weight of the risks and burden that having a child with sickle cell anaemia portend. As they always say in medical parlance a drug is only prescribed when the risks associated with its use far-outweigh the expected result.
I have interviewed scores of persons living with SCD, both children and adult. Except for a few lucky ones who lead normal lives devoid of associated excruciating pains& crises, many of them have the common refrain, “I would not wish anybody go through the kind of pains I go through. It is indescribable.”
A child with SCD is likely to live with excruciating pains or intermittent ‘crises,’ all through his or her life. He or she though can live a normal life with proper care but may have to live on medications and suffer both physical and psychological trauma from the condition.
He is at risk of other conditions such as stroke, leg ulcer, high-risk pregnancy and other health challenges. In fact, his parents also go through the trauma with the sufferer each time he is passing through a phase. Yes, currently, sickle cell disease answers to proper management and lifestyle modifications like eating balanced diet, taking a lot of water and folic acid regularly, having enough rest even as many of them live longer than what obtained in the past when they were branded Abikus. However, the number of success stories pale when compared to the affected population.
The cost of the only known cure for sickle cell anaemia, bone-marrow transplant, is highly prohibitive. At the cost of N5million per patient, bone-marrow transplant, is well out of reach of many Nigerians. All these pains and struggles could be prevented if prospective parents are aware and a little selfless enough to give up their love for the love of their yet- to-be-born child. Choosing to give up a relationship cost less than other options available to a carrier couple who goes the whole hog. The suggestion that prenatal diagnosis (PND) which offers parents an opportunity to know the status of their baby to decide whether they want to keep it or abort it, is more or less like playing God. The test is also expensive and not many can afford it in addition to the trauma associated with an abortion. How many unborn children would a carrier couple kill through selective abortion before they welcome a healthy offspring?
Broken hearts are better than broken lives. Sticking together implies one out of every four of a carrier couple’s unborn children would be aborted. and where the probably is four is three to four, the cost is even higher. Outright eradication of SCD through selective mating may not be possible. There are still people who either out of ignorance owing to low literacy level or who for sheer will have to cope with children born with sickle cell disease. Therefore, it is essential that as a matter of public health interest government invests in research to find cheaper ways of curing the disease. The Nigerian Government ought to lead the way by showing more interest than it is doing at the moment afterall, Nigeria carries the highest burden of the disorder. However, we cannot leave everything in the hands of government and NGOs, every Nigerians should take ownership and responsibility for our health care and that of our children. Our health is in our hands and as per sickle cell eradication, yes, we can.