How False Medical Report Is Increasing Number Of Sickle Cell Children

Opeyemi Afolabi had a deep-seated dislike for parents who knew they were both carriers of the AS Genotype but still chose to go ahead to get married, thereby risking having children with sickle cell disease. He felt it was irresponsible and selfish to put love ahead of the suffering of their children. 

“I used to look at children with sickle cell disease and cry for them,” he told Neusroom. “How could responsible couples know they both have AS genotypes agree to marry and bring SS children to the world? I felt it was evil to bring innocent children into this world to come and suffer. Until it happened to me.”

In 2019, when Afolabi met his wife, one of the first questions she asked was about his genotype. Before meeting Afolabi, she had walked out of a four-year relationship because she and her boyfriend at the time found out they were both AS genotype carriers. Despite their relationship’s length, they agreed to part way when they realised the risk of having children with SS genotype.

“She told me she was AS and would only marry anyone with AA genotype. I assured her that I was an AA, and she had nothing to worry about. But she insisted on seeing the evidence, so I showed her the result for the first one I did in primary school. I did another genotype test when I got admission to the university, which showed I was AA, but I did not have the result again. She also knew my position on birthing children with sickle cell disease, so was felt assured, and we got married.”

A year later, the couple had a son. Everything seemed alright until, after six months, he fell sick repeatedly, and Afolabi and his wife were constantly in and out of hospitals. He never seemed to go a month without being hospitalised, but the doctors could not tell what the problem was.

“My younger brother is a medical doctor, so I decided to consult him as the hospital visits were becoming too frequent. He asked me a few questions about the nature of the ailment, and after I told him, he suggested that we do a genotype test because the symptoms were similar to sickle cell disease. I did not want to argue with him, even though I felt it was medically impossible for that to happen. I was AA, and my wife was AS, so having a child that was a sickle cell carrier was out of the question.”

It came as a shock to Afolabi when the laboratory test result revealed that the child had sickle cell disease, which was the cause of the frequent illness and hospital visits. It did not make any sense to him. He argued with the laboratory that they must have gotten things mixed up. He even suspected that he might not be the father of the child.

“I almost accused my wife of infidelity, but I kept calm and agreed that another blood test should be carried out on my son and me. I was told the result would take up to one week. After the blood sample was taken, I could not wait for a week to get the result, so I went to another laboratory with more sophisticated medical equipment.”

The test result confirmed that the boy was a sickle cell carrier while Afolabi had the AS genotype. He became numb. How did he commit the same offence he criticised so much? The cause of the problem began in Igbaja, Kwara state when he was in JSS3.

False Medical report

Afolabi’s father was the vice principal of ECWA secondary school in Igbaja, so they lived in the staff quarters. His mother worked in the community while his other siblings were in a boarding school outside Kwara state. It was there that an NGO embarked on community-wide genotype testing.

“Before the test, my parents already told us that they were both AA, so we, the children, would automatically be AA. When the NGO came to our school, all the students and staff members submitted blood samples. In my case, my parents and I all submitted samples because we lived in the school. When the results of the tests came out, it showed I, my mum and my dad were all AA, and that was the result I showed my wife.”

When Afolabi got admission to the Federal Polytechnic, Offa, he was required to do another genotype test as part of the student registration, which also corroborated the first one he did as it also came out as AA. Thus when his wife emphatically asked him about his genotype, he told her confidently that he was AA.

“She did not take my words for it because she left a relationship after finding out that her partner was AS. To avoid marrying another AS person, she insisted I show her the result, and I showed her the one I did in secondary school.”

The swelling on their child’s body first alerted Afolabi to the problem, which made him inform his brother of the health challenges his child was facing. The brother, a medical doctor, recommended a genotype test as he suspected the child was an AS genotype carrier. He obliged, and the result confirmed his fear.

“When I submitted my blood sample to the hospital, I could not wait for one week, so I went to Harmony Diagnostic Centre, owned by the state government. I was informed that I was an AS carrier and my child was an SS carrier.”

Pain, suffering and more crisis

The knowledge that their child was an SS carrier came as a big shock to Afolabi. To find answers to his numerous questions, he informed his siblings and parents. That was when his mother revealed that she took another genotype test in the church years after the one done in the school that showed she was AS.

“It was a communication problem,” Afolabi said, “My mother did not think it necessary to inform her children that the church did another test that showed a different result. Perhaps if she had, we would have done the tests all over again.”

The experience has been challenging for Afolabi as the revelation happened during the height of the COVID-19 pandemic when he lost his job. The financial burden has also been challenging to manage as he struggled to meet the hospital demand required to improve the boy’s quality of life. All that, however, paled in comparison to the crises the boy suffers.

“Whenever the crisis occurs, nobody will be able to sleep. It can last for two days. In that period, he would be crying in pain. 

“We try as much as possible to help him manage the situation. He takes his protein daily. We try not to expose him to mosquitoes, so he sleeps under a mosquito net. He also has to take a lot of water.”

Despite all these efforts, a single mosquito bite would topple all the hard work they had done, and he would go into a crisis. For sickle cell patients, it is a period of unbearable pain. Medically, it happens when sickled red blood cells block small blood vessels that carry blood to your bones causing pain in the body. It can last from a few hours to days.

In June 2021, Afolabi’s son had a terrible crisis that almost cost him his life. He had to undergo a blood transfusion and was hospitalised for three weeks at the Federal Medical Centre in Ilorin.

He told Neusroom it was a period of excruciating near-death pain for the young boy, while for his parents, it was both physically and emotionally draining, coupled with the constant fear of death.

“He has been on medical checkups, and we do what we can to help him manage the situation, but we cannot prevent the crisis. We have, however, put a hold on having another child for now. We are on family planning for now, but when we are ready, there is a process we have been told that can help us determine the genotype of a fetus within eight weeks of conception.

“If the genotype of the unborn child is SS, that means we would have to let go of it, but if it is AA or AS, we will keep the child. For now, however, we are focused on combining our efforts to take care of this child we have.”

Benson, a 45-year old Uber driver, living in Lagos, has a story similar to Afolabi’s own. Although he did not know the genotype of his wife, he did not bother as he had a medical report that showed he was AA, so having a child with sickle cell disease was out of the question. It wasn’t until their daughter was born in 2010 that he found out that both he and his wife were AS and their daughter was a sickle cell patient.

“I did not know a lot about the disease. I just felt being AA based on a test I did in the past was enough. If I had known, I would have done another test before getting married. After that one child, we had to separate for our own good. Although my daughter stays with her mother, I make sure I fulfil my financial obligations and go to see her every weekend.

Sickle Cell Disease in Nigeria

Nigeria has the highest number of sickle cell patients in the world, as one in two babies born with the disease is Nigerian. Over 150,000 children are born with SCD in Nigeria each year. Anyone with the AS genotype is a carrier. When this mixes with another partner who has the same gene, there is a high chance of having offspring with sickle cell disease.

“Normal red blood cells are round and soft, but with SCD, they become shaped like a sickle or the letter C. The sickled cells then can block blood flow which causes pain and damage to key organs such as the heart, brain and lungs.”

The test to detect it is simple, according to Dr Oni Oluseyi. One submits blood and the lab scientist conducts the test to detect it from the haemoglobin. 

So what caused the false medical report that led to Afolabi having a child with SS? Ajoke Oyetunji, a laboratory scientist working with the Sickle Cell Foundation of Nigeria, told Neusroom it happens more often than people are aware of.

“Error can occur in the preanalytical, diagnostic, or post-diagnostic stages. An error in those stages can lead to a wrong diagnosis,” Oyetunji said.

In the preanalytical stage, things like the patient’s age and blood transfusion within 12 months of carrying out the test are some of the things that can lead to a wrong diagnosis. If this information is omitted, it can affect the result.

She explained that human or machine errors could lead to a wrong diagnosis at the diagnostic stage. There is a WHO standard that is expected to be followed. Anything short of that can lead to errors in the result. If someone not trained properly to carry out the test does so, it can affect the quality of service and, by extension, the result.

“The wrong person, the wrong machine, the wrong method can lead to a mistake in the result. At the post-diagnostic stage, wrong reading and interpretation, mixing-up of results, and wrong documentation can lead to false results. For example, it is possible that a lab that conducts several tests might mix up the results if there is no proper documentation.

“The first two stages might be done correctly, but if the post-diagnostic stage has an error, it will lead to the wrong diagnosis and affect the whole work.”

She confirmed that her work at the foundation had exposed her to several cases of wrong medical reports, which have led to having children with sickle cell diseases. She advised that people use standard laboratories.

What does the future hold?

Stem cell transplant or bone marrow transplant has been tried and tested as a solution. However, the procedure is not an easy one because finding a match can be difficult as there is only a 30 per cent chance of doing so. Also, a successful operation can still be followed by a relapse as the body sometimes fights the new cells. The procedure is also very expensive and is listed as one of the most costly surgeries in the world.

For Afolabi, the next option is to get around ₦300,000, which will help carry a test out when his wife is pregnant again. A stem cell transplant is out of the question for financial reasons.

“We are on family planning, but I would like to have another child when I have the money. This will involve confirming the genotype of the fetus early before it is late. For now, we have chosen to stay married and raise our son together. We hope to give him the best life we can.”