My son cannot father a child again, parents recount their plight with sickle cell disease

Mrs Idayat Akinwale is best described as a strong tower of refuge for Ruka, a 30-year-old mother of one living with sickle cell disease.

“We found that she had sickle cell disease at age one. Ruka was always sick, which affected her schooling. She failed her West African School Certificate examination. Rather than retake the examination, she resorted to hawing minerals,” Mrs Akinwale retorted.

However, Ruka, now 35 years old, had been married twice but, due to battering from her husbands, now leaves with her 60-year-old mother, who has been fending for her since she was a baby and her father died.

“The first husband in my presence threatened to flog her with a cane in my presence a few days after she had a baby girl through a caesarean section. The cost of the caesarean section and hospital stay was borne by me when he and his mother couldn’t pay. So, I was still with her to care for her.

“The second husband also beat her when he was drunk, even though she had sickle cell disease. He even took all the money she was using to trade in medicines, and so she packed back home with a daughter, now five years old.”

Alhaja Adekemi Hareem (not real name) has a regret that the 45-year-old son with sickle cell disease will not be able to give her another granddaughter.

“After a surgery at the hospital in 2013 when Owolabi had a persistent painful erection upon waking up one day, he has not been able to achieve an erection again. Also, he has refused to marry, although he has a six-year-old daughter from his past girlfriend,” AlhajaHareem declared.

Owolabi Abass, a father of one, has finished his secondary school education and sells recharge cards, sachetwater, and carbonated soft drinks in a shop near his parents’ residence. He couldn’t keep up the production and sales of liquid detergent because its fumes were affecting him.

Owolabi’s other siblings and his 11-year-old daughter do not have sickle cell disease or sickle cell traits. He had inherited the sickle cell disease from his parents, who were both of the AS genotype.

Mrs Moromoke Adenuga’s experience with sickle cell disease is slightly different. Her 32-year-old son, Biodun, was discovered to have sickle cell disease at three years old. Her first child, also with sickle cell disease, died at age 18 after a lot of money had been spent on her health.

Biodun has always been sick about the examination period, and on admission at the hospital, he left school after finishing senior secondary class two. Over the years, out-of-pocket spending on his health and his late sibling left Mrs Adenuga in penury.

These women were among the “Mothers of Warriors in Action (Mowa)” celebrated by the Sickle Cell Hope Alive Foundation as part of their activities to mark World Sickle Cell Awareness Month.

The founder of the Sickle Cell Hope Alive Foundation (SCHAF), Professor Adeyinka Falusi, stated that about six million Nigerians have sickle cell disease, with another 45 million being carriers of the traits of the disease that come with a lot of pain, leg ulcers, anaemia, damage to organs, loss of working hours, and other challenges.

“150,000 children are born annually in Nigeria with sickle cell disease, while many die because they are at increased risk of infections, strokes, painful erections, bone pains, and jaundice,” he added.

According to her, many people mistake their blood group for their genotype, with many only getting to know that they have the gene for sickle cell disease after marriage.

“Don’t be blinded by love; know the correct genotype of your partner. The genotypes of the couple determine the genotypes of their offspring. We are not saying that a person with an AS genotype shouldn’t marry another person with an AS genotype. But we want them to make an informed decision,” she added.

Dr Olayinka Kotila, a senior lecturer at the University of Ibadan, said the economic and financial burden of sickle cell disease is huge.

“A study showed that a person with sickle cell disease spends nothing less than N76,000 per month on care, aside from the financial burden of hospitalisation, loss of work days for caregivers, absenteeism from school. These unending costs and burdens for managing sickle cell disease are not comparable with those of genotype tests,” she declared.

As “Mothers of Warriors in Action (Mowa),” Mrs. Adenuga said to maintain hers son’s health, ensuring that he eats plenty of protein, avoids cassava products like fufu and eba, increases his intake of vegetables and fruits, and drinks plenty of water is important for the prevention of sickle cell crises.

Alhaja Hareem added the need for the avoidance of self-medication, including the use of herbal medications to prevent liver damage.

“If their eyeballs are yellow, make sure that they drink plenty of water to rehydrate them and also take all their prescribed medications religiously. If sick, they should go to the hospital rather than self-medicate or agbo, which are herbal remedies,” she added.

Professor Olaitan Soyannwo, who described having children with sickle cell disease as a challenge like many other mothers face, asked that they not relent in their efforts to support these children.

According to her, “women are warriors for patients with SCD; they should first accept the challenge, which is due to the fact that they are born with the disease. But it is also important that men be there to support these children, particularly when they are in pain.”

Professor Soyanwo declared that children with sickle cell disease are very intelligent and, with the right guidance and medical support, can become great citizens, better than their contemporaries with sickle cell disease.

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