Do you know your Genotype?

If you don’t, please go and do a test. And get to know the genotype of your spouse and family members. It’s really important. Below is a true story of a man (AS) who married a woman (AS) (didn’t know their genotypes before getting married) and had five children, all (SS). Sadly, they lost two of them….



Mr and Mrs Adewale and their three surviving children



A family’s struggle with Sickle Cell

The loss of a child is a traumatic experience most parents wouldn't wish for. It is usually prayed against, hoped against, with parents going to great extents to prevent a child's demise. But the loss of two children is as heartbreaking as it can be for a family.

Abel Adewale and his wife, Beatrice, have lost two out of five children to complications arising from sickle cell anaemia. As sad as their deaths were, what was even more depressing for the parents were the circumstances in which they died, circumstances they wished they were previously educated about and could have prevented.

Mr and Mrs Adewale got married in 1990, at a registry in Ilorin, Kwara State. At the time they got married, Mr Adewale was a primary school teacher at Ilorin, Kwara State; while his wife was a midwife at the Christ Apostolic Church Hospital, also in Ilorin. While Mr Adewale received his training at Teachers Training College, Osun State, Mrs Adewale only had her formal education up to secondary school and trained as a midwife in the church. At that time, neither of them had heard about sickle cell anaemia. They said they were oblivious of their genotypes and started having children soon after their marriage.

"I had never done a genotype test before marriage; we didn't do any medical test. We got married in a court in Ilorin," said Mr Adewale. The couple had their first child in July 1991, and four followed thereafter. However, as wonderful as the growth of their family was, their joy was marred by the sickly state of all five children.

"It was always sickness, sickness, complaining of sickness. Sometimes, all of them will be sick at the same time. Sometimes, it will be two or three of them," said Mrs Adewale.

In search of succour

The search for a solution to their children's sicknesses had them relocating several times, searching for spiritual help. "We lived in Ilorin before," said Mr Adewale. "Then we moved to Ondo State, then Osun State, before coming to Lagos. Whenever they had crisis, we thought it was the devil or household enemies that are doing this thing. Then we will go to mountain and pray for them."

Despite the spiritual interventions, the sicknesses persisted until June 2001 when they lost a daughter, Faith Adewale, aged 10. At the time of Faith's death, the couple said they were still unaware of their genotype as well as that of their children. "It was (later) when one of them was admitted in Mercy Children Hospital in Lagos, that was when I began to hear about that thing, sickle cell anaemia," Mr Adewale said.

"Before I knew that there was something like that really, it was in 2008. When I lost Faith, I didn't know that it was sickle cell. Not until we did the genotype test that I knew that I was AS and my wife AS, and all the children are SS," he added.

The discovery that their genotypes could produce children with SS genotypes was as shocking as it was regretted. Mrs Adewale recalled that December 2010 was a very difficult moment for another daughter, Kesia Adewale. But when it seemed like she was going to make it into the coming year, she breathed her last on December 28, 2010.

According to the couple, the financial and medical demands for the remaining three children; Hope Adewale, 19; Ruth Adewale, 13; and Samuel Adewale, 7; are very challenging. "It has been so hectic, especially the financial aspect," said Mr Adewale. "When they are sick, we have to go to hospital, we have to buy drugs, pay hospital bills. Whenever the rain falls, when it is cold, they will be complaining of pain, crisis. And whenever there is too much of sun, they will also be complaining."

A history of complications

He recalled some complications the children have had as a result of sickle cell anaemia. "There are a lot of sicknesses they use to have," he said. "There was a time one of them, Hope, had a swollen leg for a very long time that it had to be operated upon. And some things that came from that leg nearly paralyzed that leg. Up till now, the leg is not as balanced as the second one. I remember a time when it was so severe for her that she had to be crawling, using her hand to walk, and we had to take her to the hospital.

"There was also a time for Ruth, she had to be crawling because she couldn't stand also. There was a time Samuel had a swollen leg and up till now, it is still there."

For Mr Adewale, who is now a pastor at Christ Apostolic Church, Ikorodu, he will never join a couple together who are either carriers of the sickle cell gene (AS) or are ‘sicklers' themselves (SS). "My advice to people that are getting married is to do their genotype and make sure AS marries AA, and SS marries AA. They should not rush into it and say I love her, I love him, I can cope. When the problem comes, it is not only the children that will suffer but they too will suffer it," he said.

According to Mr Adewale, he has sold all his belongings to cater for medical bills for his children. He called on well meaning people to come to his family's aid as they are in dire need of financial assistance.

"If you see anything on us, it's by the grace of God. If not because of the faith of God in us, we will not be alive till today. The children are always in pain. Your children cannot be crying in your presence and you'd say you are enjoying. No matter what you have, you'd go and spend it on them."

The Adewale family is seeking your kind assistance for financial help. Please send donations to the family through First Bank of Nigeria, Account no 1793010311939, Adewale Abel Olu.

This article was first published in NEXT Newspaper