FEATURE: ‘We lost our marital joy after he was diagnosed of sickle cell disease’, parents lament ordeal of caring for sick child

Aisha, a mother of four shared her ill-experience of her first born who was a sickler: “giving birth to our first child as a newly wedded couple was a thing of joy, until he was six months old when he began his unusual midnight crying and high fever, we took him to hospital and he was diagnosed of sickle cell disease. That was how the marital joy began fading steadily. Although, we lost him, we are yet to recover from the loss incurred by his sickness” she recounted.

Kolade recounted his experience with the father to a sickle cell child: “Just barely two weeks ago, an old friend of mine reached out to me for financial support for his kid who was a confirmed sickle cell patient, lamenting how much he spends every two months as a result of the crisis of her daughter” he narrated.

Also, the father of a sickle cell patient named Lawal Muhammad who spoke to this reporter at the Emergency Paediatric Unit (EPU) Federal Medical Center, Gusau described the disease as an unhealed wound he keeps nursing with his wife.

He said: “My wife and I were unknowingly both sickle cell carriers (AS). Our first kid was healthy while the second born was a sickler (SS), who despite money spent, we lost him.

“We thought since we have had a sicker child and lost him, there would be no problem afterwards, since the general notion was that if two AS couple got married, the chances are that they would have a sickle cell child. It is not the same in our own case. When we gave birth to the third child, he was also a sickler again.

“Our hope became dashed second time. As I am telling you, office is where I derive most of the pleasure, the love that bound our home together is no longer there.

“Every month, if I am not buying antibiotic drugs, I would buy blood tonic, and when it is not blood tonic, it could be that we are hospitalized which often come with a huge financial burden. Most times, we usually do shifting while in the hospital” he narrated.

Available Information and Data

Sickle cell disease is one of the agelong diseases that is seemingly uncurbed over the years. The disease is a genetical blood disorder that can be transferred from parent to offsprings; although the disease is incurable it can be prevented with appriopriate measures, as it has been evidented that its prevalence is associated with a carrier marrying a carrier of abnormal hemoglobin variants. This menace persist because these people are less aware of the implications attached.

According to available data from the World Health Organisation (WHO) over 300,000 babies are born with the Sickle Cell Disease every year. 70% of this population are in Africa, while 60% are found in Nigeria with an estimate of 150,000 of annual births. This data is an indication that Nigeria is an epicenter for sickle cell diseases.

Psychological implications on both parents and child; development of crisis from early life (5th-month); perpetual hospital visit at least once in a month; financial implications of hospitalization, drugs procurement, blood buying; risk of transmissible infection as a result of frequent blood transfusion are some of the burdens parents with kids with sickle cell disease bear.

The major cause of sickle cell disease is when two individuals who are carriers (AS) marry each other. There is a high probability that the abnormal genes will be transferred or carried to the child making him have sickle cell disease. The complications usually arise in such child when he is too stressed or highly exposed to temperature. While the complications that comes with it are frequent crisis, anemia, stroke and kidney disease.

READ ALSO:Senate passes bill on control of sickle cell in Nigeria

Why Nigeria Has High Case of Sickle Cell Disease

According to many experts, the reasons Nigeria has become an epicenter of sickle cell disease can be traced to firstly lack of awareness and data about the sickle cell disease and its cause. Secondly, negligence to medical advice: most times despite the fact that people are aware of the significance of their genotypes they still go ahead to marry each other holding to false belief associated with birth order.

Also, stakeholders attribute low budgetary allocation to the health sector as a significant factor, because when allocation is low, policies meant for care, treatment and management of sickle cell management will be underfunded resulting in high child mortality rate.

Experts Advocate For Formalizing of Genotype Screening Test

A Senior Medical Laboratory Scientist, af Federal Medical Center Gusau, Zamfara State MLS. Yahaya Buhari warned that there should be a great consequence for anyone who knowingly goes ahead to marry each other despite knowing that they are incompatible.

He demystified the false belief that the chances that an AS couple would have an SS offspring is at the fourth birth. He said it was untrue. He said even though it is 1 in 4 chances, it doesn’t mean it would come at the fourth issue. He explained further that it can come in any order, either first or fourth and that in-fact two kids can be SS consecutively.

“If couples are aware that they are not compatible, they should not go ahead because the pain of losing a partner is not comparable to the pain of nursing a sickle cell child. The emotion, physical and even the pocket will suffer for it. The child will share the major consequences.

“The child would experience frequent crisis and discrimination won’t make him/her emotionally stable. S/he would risk being infected by viral infections as a result of frequent blood transfusions. Because their immune system is usually not strong, they consume antibiotics than every other child, which also make them predisposed to antimicrobial resistance among other consequences. So they should never near it. It is risky”, he fumed.

He also expressed concerns on the practice of consanguineal marriage practised among Muslims without genotype screening test.

In his words: “The disease is a genetical disorder which means if the family has history of the sickle cell disease, practising consanguineal marriage will make it spread within the family. The best way to prevent that is formalizing genotype screening test during the arrangement.

“Although, there has been a lot of developments in easing the pains of the warriors, they are not easily affordable and accessible. I will also advise parents of sickle cell children to keep them hydrated with clean water and healthy food. They must also avoid been exposed to intense sunlight, murky dust and heavy workload”, he advised.

 

 

By Ibraheem Olasunkanmi Qoseem

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