“What is the potential outcome?” Love in the region with the highest prevalence of sickle cell disease.
Subomi Mabogunje was immediately drawn to Nkechi Egonu when they first met in 2004 while both working at a state-owned television station in Ijebu Ode, a bustling trading center in south-west Nigeria. Unlike Subomi’s thin and bespectacled appearance, Nkechi was petite and curvaceous, with her hair styled in a ballerina bun. She seemed unfazed by the attention she received from others around the office. Her confident demeanor contrasted with Subomi’s reserved nature, and she quickly rose to the position of programme presenter. In Subomi’s eyes, Nkechi was the most captivating person he had ever encountered in his hometown.
During a weekend of community service, Subomi gathered the courage to approach Nkechi. Together, they were assigned to clear overgrown grass near a government building. Despite typically avoiding strenuous physical activity, Subomi participated. Nkechi playfully teased him, commenting on his frail body and delicate features. Despite potentially being labeled as a “sickler” due to his sickle cell disease (SCD), a group of inherited blood disorders that cause red blood cells to become rigid crescents and lead to complications in major organs, Nkechi never treated Subomi differently. In fact, within a few weeks of their first conversation, they became inseparable.
From the start, Nkechi was aware that she and Subomi were not suitable for a romantic relationship. This was because Subomi had an SS genotype, meaning he had two abnormal S genes for the protein haemoglobin that carries oxygen in his blood. On the other hand, Nkechi had an AS genotype, with one abnormal S gene and one normal A gene. Like approximately 25% of Nigerians, she carried the sickle-cell trait without showing symptoms. This meant that there was a 50% chance that their child would be born with sickle cell disease (SCD). This was a serious concern as Subomi’s childhood was overshadowed by secrecy and shame due to his condition, and Nkechi had already lost four cousins with SS genotype to SCD. However, these deaths occurred before genetic testing became widely available. In today’s society, especially among the educated and upper-middle-class, there is a consensus to avoid passing on two sickle-cell genes to children.
When and how do we balance the risk and attachment in a relationship? Nkechi disclosed her genotype to Subomi shortly after they met, but he continued to love her. By the end of the year, Nkechi had also fallen in love with Subomi, but questioned if it was sustainable. In March 2005, she moved to Lagos by herself and Subomi followed. In April 2006, she ended things with him at a fried chicken restaurant, yelling about how foolish it would be for them to stay together due to their differences in education; however, they got back together a week later. She broke up with him once again in January 2008 while sitting in his car, but they reconciled after a month apart.
Nkechi ended her relationship with Subomi in late July 2009, just before her 30th birthday. As the oldest of six siblings, she had concerns about not being married or starting a family, something uncommon for Nigerians of her generation. She even sought advice from a genetic counselor at the Sickle Cell Foundation Nigeria, who recommended ending the relationship. (A representative from the foundation stated that this goes against their policies.) Nkechi and Subomi had a three-hour conversation filled with tears as they watched the sun set, and Nkechi continued to cry on her bus ride home. These tears were a mix of grief and relief, as she had finally and responsibly severed this difficult attachment.
Subomi didn’t get much rest that night and the following morning, he began his journey to his father’s residence in Ijebu Ode. Nkechi had a feeling to check in with him later in the day to confirm his arrival. When she called, Subomi’s superior answered the phone.
“I was just about to give you a call,” Nkechi remembers him saying on a poor connection. “Subomi was in an accident.”
Subomi’s car was involved in a serious accident less than an hour away from Lagos. It was hit by a truck and flipped over. He was rushed to a hospital in Ibadan by paramedics. Nkechi felt a sense of panic as she embarked on a lengthy bus trip to the hospital at dawn.
Subomi was in the ICU, in a coma. Nkechi held his mother’s hand as the doctor explained his prognosis. It could be hours, days, weeks or months before he woke up, if he woke up at all. Nkechi had to work on Monday, but she returned to Ibadan the following Friday, inaugurating a regular weekend pilgrimage.
On the initial Saturday of September, she arrived as expected and was surprised to see Subomi awake. She shrieked with happiness and held onto his hands. He was eventually released from the hospital, but still had a lengthy path to healing. Nkechi replaced her weekend travels to Ibadan with visits to his mother’s residence in Lagos. She aided him through challenging exercises, assisted with sponge baths, and crawled alongside him as he regained his ability to walk. Amazingly, he was able to stand on his own within six months. Whenever Nkechi was not by his side, he would ask her when they would be getting married.
She would remind him that they have ended their relationship.
He would often say, “I cannot remember that,” followed by a reminder that he was in a coma for a month. It was difficult for her to determine if he was truly being sincere.
Subomi was able to walk and drive once again in the new year, and as he regained his strength, Nkechi’s attraction towards him grew. She didn’t attempt to suppress it. Their family members were not pressuring them about their future for once. In August, while Nkechi was making sure Subomi’s bed was comfortable, he surprised her by pulling out a pink tourmaline ring and asking for her hand in marriage.
Afterwards, Nkechi would think back on the past six years – their unexpected encounter in Ijebu Ode, their time spent at the car-wash bar, their fights and reconciliations in Lagos, the accident, and his recovery – and question if they were making the correct decision. However, at that moment, she confidently said yes without any hesitation.
Nigeria has the highest rate of sickle cell disease in the world. Its population makes up approximately half of all new cases of severe blood disorders globally. SCD is a widely occurring genetic disorder, with Nigerians having a significantly higher prevalence of the sickle cell trait compared to individuals of northern European descent with cystic fibrosis or Ashkenazi Jews with the Tay-Sachs gene.
During the 1950s, many scientists proposed that the presence of the sickle cell trait may provide some protection against malaria. This idea is now widely accepted and could explain why the gene is prevalent in sub-Saharan Africa, where over 90% of all malaria cases occur. According to this theory, over time, more individuals with the AS genotype (having one sickle cell gene) survived severe malaria infections and passed down their single S genes to their offspring. However, those with two copies of the gene (homozygous) may experience complications such as acute pain episodes, acute chest syndrome, strokes, priapism, jaundice, numb chin syndrome, an enlarged spleen, leg ulcers, and blindness.
The heritability of sickle cell anaemia, the most prevalent and severe form of SCD, can be described as follows: if both parents carry the gene (AS/AS), their offspring have a 25% likelihood of inheriting the disease. If one parent has the disease (SS) and the other does not carry any sickle cell genes (AA), their children will have a 100% chance of being carriers (AS) and a 0% chance of having the disease. In a couple like Nkechi and Subomi, where one parent has the disease and the other is a carrier, there is a 50% chance of having an SS child and a 50% chance of having an AS child.
In the 1960s, Olufemi Akinyanju, an 86-year-old haematologist from Nigeria, began identifying individuals with sickle cell disease as a young doctor in Lagos after completing his medical studies in London. In 1994, he established the Sickle Cell Foundation Nigeria in Lagos, which has become one of the leading centers for treatment and diagnosis in the region. His generation of physicians played a crucial role in promoting SCD testing in Nigeria. The most commonly used test is haemoglobin electrophoresis, which involves passing electrical currents through a blood sample to separate different types of haemoglobin into distinct bands. This test is now widely available in major cities like Lagos and Abuja. While high-end facilities may charge up to $40 for testing, there are also low-cost or free clinics that can provide results in just 30 minutes.
Nkechi, born in 1979, has been aware of her genotype since she was seven years old. However, access to testing is limited outside of major cities, particularly in the poorer northern states of the country. In less well-equipped clinics, test results are often unreliable. Some individuals, like Ezekiel Ogbu, a 36-year-old bus driver with sickle cell disease living in Lagos, learn this the hard way. In 2018, just weeks before his wedding, he discovered that his fiancée, who had believed she was AA, was actually AS. As a result, they ended their relationship and canceled a wedding with over 500 guests. Many advocates for sickle cell disease in Nigeria now recommend multiple blood tests to ensure accuracy.
Finding out your genetic makeup is one thing, but understanding its consequences is another. Due to Nigeria’s cultural emphasis on marriage and the limited availability of prenatal testing, there is a growing social expectation discouraging individuals with sickle cell genes from marrying or even dating. However, not all Nigerians share this perspective, as a study conducted in 2015 revealed that one in five couples with AS-AS genotypes still chose to get married after learning about their results from premarital screenings. Nevertheless, many Nigerian churches and mosques now require genotype screenings for marriage, and some states have implemented laws mandating premarital testing. In 2020, the Nigerian Senate discussed a bill for managing sickle cell disease that included provisions for nationwide premarital testing. During these deliberations, Senator Chukwuka Utazi from Enugu State shared his own experience of a genotype-related breakup and recognized the difficult decisions that individuals may face. However, he also acknowledged that in African culture, marriage is often viewed as a means to have children rather than for romantic love. Another senator added, “We must not let love ruin the most important aspect of our marriages.”
Heterosexual couples from Nigeria who are faced with genetic decisions are not just struggling with the choice to end their relationship or get married. They are also contemplating what constitutes a fulfilling life, for themselves and their potential offspring. SCD is not necessarily a death sentence, particularly in urban areas like Lagos, but it typically has long-term effects. The two most successful treatments for this condition, bone marrow transplants and gene editing, are not accessible to the average person. Many Nigerians with SCD must manage painful crises, obtain costly medications, find specialized care, and confront discrimination, which can create barriers to starting their own family in the future. Is it ethical for such individuals to even exist? While the question may seem crude or lacking in moral values, when Nigerian couples who are carriers of SCD choose to separate, their unspoken answer is often no.
Their worries are also widely applicable outside of SCD. With the increasing prevalence of genetic testing, numerous expectant parents in various nations will face the dilemma of which diseases to screen for. They will also contemplate which health issues truly pose a threat to their child’s future, and which ones can be effectively managed. The extent of control one has in these situations is also a concern. Ultimately, they will have to weigh what they are willing to sacrifice to be with their significant other. In Nigeria, these inquiries are already a regular part of daily existence.
Last year, I traveled multiple times to Lagos to meet with Nigerians who have gone through the ups and downs of dating, love, and marriage while dealing with their sickle cell genotype. Like any other city, Lagos is full of individuals striving to make logical choices about their future. According to a study conducted in 2021, involving over 1,300 Nigerians living in the city, 29% of participants had terminated a relationship because of “genotype incompatibility”.
I met various individuals from Lagos who had ended their relationships in their 20s with their significant other; a couple in their 40s who found out their daughter had sickle cell disease and realized they both carried the trait; a single mother of three whose husband left her when their two children with sickle cell disease experienced frequent crises; multiple older unmarried women with the sickle cell trait who had given up on the idea of marriage; and a 70-year-old woman with sickle cell disease who had been happily married for over 50 years.
I heard about people who had forged their genotype test results, people who hid their status from their spouses, and couples who lied to get married in their house of worship. People explained all these weighty decisions straightforwardly, as though recalling what they had for lunch. Everyone I spoke to was religious – either Christian or Muslim, Nigeria’s two major faiths – and expressed the belief that any outcome, be it heartbreak, late-in-life romance, or a child with surprise SCD, had, to some degree, been willed by God.
While many carriers are concerned about passing Sickle Cell Disease onto the next generation, Lagosians who already have the condition face challenges in their romantic relationships. For example, 30-year-old Princess Samuel endured the painful episodes of her childhood, but fell in love with a medical student while in university. Despite his promise not to care about her genotype (as he was AA), they kept her status a secret from his less accepting parents for three years. However, in 2017, she experienced a severe crisis and her boyfriend was worried for her life. He used his connections to expedite her treatment at the hospital where his mother worked as a nurse. His mother assisted in getting Princess priority treatment but then ended their relationship and demanded they break up. They did, and he got married to someone else last year.
Princess has experienced a few romantic pursuits since then, but they have all faded when she falls ill or needs to be hospitalized. Last spring, she quit her job and moved back in with her mother. She has had three more episodes of vaso-occlusive crises, where sickled red blood cells clump together and deprive tissues of oxygen. One of these crises resulted in a hospital bill that was nearly equivalent to her mother’s annual rent. Living with Sickle Cell Disease (SCD) is financially burdensome. Treatment methods include taking vitamins, painkillers, and antibiotics (costing up to US $30 per month for Princess), hospital stays (sometimes costing $150 per day at a private hospital), blood transfusions (often costing over $100), and specialist fees – all of which are even more difficult to manage in Nigeria’s struggling economy. The cost is not only a challenge for patients, but also for their potential partners and families. “Many people believe the easiest solution is to just walk away,” stated Timi Edwin, a 35-year-old SCD patient and advocate.
Kechi and Subomi were married twice – first in her Igbo family’s village in Mbaise, and then in a Yoruba ceremony in Ijebu Ode. The first ceremony took place on December 3, 2010. Nkechi was a serene and joyful bride, dressed in a lilac crepe wrapper and a coral-bead headdress. Subomi wore a shirt adorned with the traditional Igbo motif of roaring lions. A week later, at the ceremony in Ijebu Ode, Subomi’s cousin washed Nkechi’s feet as she entered the house as a bride, even though she was already familiar with the place. They chose not to have a third wedding in a church, which also allowed them to avoid premarital genotype testing requirements.
Uche, Nkechi’s sister, had multiple encounters with Subomi while they were in a relationship. “I asked her many times if she was truly prepared for the possibility of having a child with sickle cell disease,” Uche shared with me. She also wondered if Subomi’s family was aware that she was a carrier as well. “However, after the accident, she did an excellent job taking care of him,” Uche added. It seemed unnecessary to continue questioning.
Subomi and Nkechi received a 2-bedroom house in their family’s Lagos compound as a wedding gift from Subomi’s parents. Everyone, including Nkechi’s 100-year-old grandmother, was in a celebratory mood during Christmas, especially since Nkechi was starting her adult life. However, Nkechi and Subomi kept their decision not to have children a secret from her grandmother and everyone else, as it was a condition for their relationship.
After tying the knot, they were able to live together and they thoroughly enjoyed their city. They often frequented Lagos’s nightclubs and urban beaches on weekends and attended separate churches on Sunday mornings. They even worked together on graphic design projects. However, as time went on, their routines began to shift. They spent more evenings at home watching TV instead of going out. Subomi started to feel isolated once again, longing for more people in their household. He began to persuade Nkechi to consider having a baby, believing that there must be more to life than their current routine. He pleaded, “Can we please have just one?”
Nkechi’s friends started having children and she found herself attending their babies’ ceremonies and birthdays. Additionally, her younger brothers had children as well. This caused her to reconsider her decision to not have children. Her doctors informed her that advancements in SCD management have greatly improved, and that babies born with an SS genotype now have a better chance of living a long life. As a result, at the age of 32, Nkechi made the decision to stop taking birth control.
For four years, there were no significant events. However, in the beginning of 2016, she discovered she was expecting a child. Upon sharing the news with Subomi, he became emotional and began to cry.
In a quick succession, they had to address the obvious issue. Conducting a test to determine the sickle cell genotype of the fetus would involve a invasive procedure. Subomi pleaded with her not to undergo it, citing the slight possibility of miscarriage and the struggles they faced in conceiving. A week passed as Nkechi contemplated, while the fetus began to kick. She came to the realization that she could not proceed with an illegal abortion, regardless of the genotype results. “Well,” she informed Subomi, “let’s do it. What is the worst that could occur?”
On 20 October 2016, Nkechi’s child was delivered via caesarean section. After waking up from the anaesthesia, she was in a cold sweat and discovered that her son was in another room. Nurses were starting him on a ventilator as he had ingested his own stool during the delivery. When Nkechi finally saw her son, he was receiving intravenous antibiotics. She did not anticipate feeling such a strong attachment to her newborn and the responsibility that came with it. Two days later, they brought him home and gave him the name Momoreoluwa, which means “I know the grace of God.” They affectionately called him Momo.
Subomi was filled with happiness. He spent the entire day with Momo, discussing current events, taking care of his diaper changes and bath time, and watching him sleep. However, both parents were anxious until they took three-month-old Momo for a sickle cell screening. When the results showed that he was only a carrier, they were elated.
Seven months had passed when Momo awoke, crying and with puffy hands. Nkechi’s mother immediately identified it as dactylitis, a swelling of the fingers or toes caused by blocked blood vessels and a common early sign of SCD. However, there was still uncertainty about Momo’s genotype. The presence of foetal haemoglobin, which can linger for months, may have affected the results. Nkechi rushed Momo to the hospital where he was born for a new blood test, which confirmed that he had the SS genotype. That same night, he began his daily routine of taking antibiotics and antimalarial medication.
Nkechi understood that Subomi was too upset to offer much assistance. She knew that part of his distress stemmed from his own difficult childhood experiences, where his distant relatives predicted he would not live past the age of 10 and his parents warned him to keep his condition a secret. However, Momo’s situation was different from Subomi’s. He had been diagnosed early and advancements in treatment had increased life expectancies for patients, and his parents were more knowledgeable about managing the disease. Nkechi was determined to be open about her son’s condition and not hide it. She reassured Subomi, saying, “You can do better for Momo than your parents did for you.” Despite their initial anxiety after Momo’s diagnosis, they were able to relax a bit after successfully keeping infections at bay for months. Perhaps they had not been completely irresponsible in taking the chance of passing on the genetic condition. Maybe the worst case scenario was not as terrible as they had feared.
There are currently no widely accepted guidelines for genetic testing, but there is a general agreement on specific conditions within certain communities. The first instance of prenatal diagnosis for Down’s syndrome occurred in 1968. Since then, it has become a standard practice for pregnant women in many parts of the world. In countries like Iceland, the majority of women opt to undergo screening, and a large percentage of those who receive a positive result choose to terminate their pregnancy. This has led to a significant decrease in the prevalence of the disorder in Iceland. However, not everyone agrees with this approach, with some arguing that these selective abortions are a form of eugenics.
In societies where abortion is prohibited or discouraged, decisions concerning genetics and reproduction are made earlier in the process of starting a family and tend to involve more input from the community. This was the situation with beta thalassemia, a recessive genetic blood disorder, in Cyprus. In the 1960s, around 80 babies with this condition were born each year on the island, but in the 1970s, local doctors began to strongly encourage carrier screening, counseling, and prenatal testing. They eventually convinced the Cypriot Orthodox Church to require premarital screening certificates. As a result, by 1986, there were no babies born with beta thalassemia in Cyprus.
However, the community of Cypriots in this instance was relatively small and homogenous. In Nigeria, the citizens of a large and diverse democracy have developed their own perspectives on genetic responsibility. In 1986, Olufemi Akinyanju, a haematologist who established the Sickle Cell Foundation Nigeria, trained the first genetic counsellors in Lagos. Presently, over 500 genetic counsellors, trained by the foundation, are employed in various African countries where SCD is prevalent. They represent only a small portion of the efforts being made, including public health campaigns, widespread testing, and increased awareness of SCD in popular culture. The Afropop singer Adekunle Gold sang about sickle cell in his single 5 Star last year, saying “Sickle cell has shown me crises / I will never forget the 90s / Many nights I begged for mercy.” The counsellors are instructed to be “non-directive,” providing information but not forcing any specific actions. They are also advised to avoid using phrases like “if I were you” and “I’m terribly sorry for you,” particularly when discussing marriage or procreation.
Although there is limited data, Nigerian experts focusing on SCD believe that the number of cases has decreased in their country, particularly in urban areas. However, the adoption of testing and changes in societal standards have been divided along economic lines. According to Toyin Adesola, the executive director of an SCD advocacy group, there appears to be a lower occurrence of SS births in middle and upper-class households. This indicates that the disease is increasingly affecting impoverished communities. In Kano State, which is part of the less developed, Muslim-majority northern region, the prevalence of the sickle cell trait is reported to be as high as 41%, compared to the nationwide average of approximately 25%.
“We don’t see eradication as the goal, at least for now,” said Annette Akinsete, the national director of the Sickle Cell Foundation Nigeria. Instead, she hopes to see more widespread newborn screening so that patients can get a head start managing the condition, as well as free or subsidised antibiotics and supplements.
Currently, the typical lifespan of individuals with SCD in Nigeria is probably less than five years due to the high rates of infant mortality in impoverished areas. However, a middle-class Nigerian patient who has access to resources, particularly in Lagos, has a “high likelihood” of successfully managing their condition into adulthood, according to Akinsete. Many medical professionals in Nigeria do not aim for completely eliminating future cases of SCD, but rather reducing the number and improving the quality of life for those born with the condition.
In wealthy nations, the average life expectancy for individuals with SCD has increased to 40-60 years, more than twice what it was in the 1970s. In these countries, expectant mothers can easily determine if their unborn child has cystic fibrosis, fragile X syndrome, spinal muscular atrophy, or other conditions. Additionally, anyone can obtain a basic genetic profile within a few weeks, regardless of their plans for parenthood. For approximately £129, 23andMe can identify carrier status for over two dozen conditions and also provide an estimate of the likelihood of developing breast cancer or Alzheimer’s. However, these advances are unlikely to significantly decrease the occurrence of any specific condition without public health initiatives. Nevertheless, individuals like Nkechi and Subomi may find themselves considering their genetic information while dating, falling in love, and starting a family – and deciding whether or not to take action based on this information.
Omo had the same spiraled hair on his head as Nkechi’s arms, but he inherited Subomi’s dark skin, slender feet, dark eyelashes, and occasional displeased expression. He happily sat on various laps at church and remained optimistic when Nkechi left him with his aunt, who raised him alongside her own kids. He turned two years old without any further issues. For Christmas in 2018, Nkechi decided to take him to visit her family in Mbaise. Meanwhile, Subomi stayed in Lagos to celebrate with his mother and sister.
Upon arriving home, Nkechi noticed a yellowing ulcer on Subomi’s leg that was about the size of a grape and located over his left ankle. She expressed concern, saying, “I leave you for a week and this happens?” Subomi reassured her that it was not a big deal and did not cause any pain. Leg ulcers are common in adults with Sickle Cell Disease. However, the ulcer continued to grow and eventually reached the width of a lime. Subomi’s feet also began to swell. In February, a small ulcer appeared on his right ankle, but it quickly grew into a large crater by Valentine’s Day, preventing them from leaving the house for dinner.
At 5:45 am on February 21st, Subomi awoke in agony and was taken to the hospital by a friend. He was promptly admitted to the emergency ward and by the time Nkechi arrived an hour later, he had already received antibiotics and had his wounds treated. The doctor informed her that Subomi would be released within a few days and that the situation could have been much worse if he had not been brought in at the right time.
The following day, Nkechi woke up earlier than her usual time, around 5am. She attempted to reach Subomi’s nurse and doctor, but they did not answer. A rush of adrenaline overcame her. She quickly dressed and drove to the hospital. Upon arrival, the doctor informed her that Subomi had experienced an unexpected blockage in his intestine and had passed away.
Nkechi’s hearing suddenly became filled with a high-pitched noise.
The doctor stated that anyone can experience this. In Subomi’s situation, the exact cause cannot be determined. Blood disorders, such as Sickle Cell Disease (SCD), are known to increase the risk of blood clots, which are the main cause of embolisms. However, other factors like age, certain medications, and high cholesterol can also contribute to this risk. Even someone with an AA genetic makeup could have faced the same outcome.
Nkechi was uninterested in the details. Her husband had passed away. The doctor began to offer his condolences, but she interrupted him. She informed her family, who mourned over the news, and then went back home to tell Momo. She was feeling anxious and her thoughts were fixated on one question: “Nkechi, what should you do next?” As a single mother now, she had a son who required constant medical care. Should she move to a different location – perhaps California where her brother resided? Should she stay put? Should she keep their business going? There was also the matter of planning a funeral for the following week.
Subomi’s funeral took place in Ijebu Ode, with attendees coming from as far as Canada. Nkechi appeared to be in a daze throughout the ceremony, and no one recalls her shedding tears.
After three months had passed since his father’s passing, Momo experienced a crisis. Nkechi observed that he had become unusually quiet and his stomach was bloated. It was a condition called splenic sequestration, where sickle cells trap excessive blood in the spleen. Momo was admitted to the hospital for one night and received a blood transfusion. In 2021, he had another crisis called sepsis and stayed in the hospital for 10 days, receiving antibiotics. On the fifth day, Nkechi’s mother-in-law briefly visited. Currently, Nkechi is primarily responsible for raising Momo.
I met Momo just before he turned six years old. He is smaller than most children his age and his slightly bloated stomach is noticeable beneath his yellow school uniform. Nkechi makes sure to remind all of his teachers to keep him hydrated and avoid strenuous activities. She has told her son that he has a “special condition”. Momo is not shy about his illness, even though he may not fully understand it. “I’ve been to the hospital so many times!” he happily shared with me. (Nkechi takes him to a government pediatric hospital every three months.) Momo sometimes reminds his mother to give him his pills, which he chews like candy. Finances can be tight, so Nkechi prioritizes Momo’s medication and cuts back on other expenses. As far as she knows, Momo is the only student in his kindergarten class with this disease. “But some parents are uncomfortable with it,” she confessed. “So who knows.”
According to Akinyanju, the aim of managing SCD is to prolong the time between crises. Momo has successfully passed the high-risk period for infections during early life. However, children from less privileged backgrounds may not be as fortunate. In my visit to Lagos, I also met Tawakalitu Ayinde, an impoverished single mother of four daughters, one of whom has SCD. Her nine-year-old daughter, Oluwaseyifunmi, suffered seven strokes between 2017 and 2022. The most recent one in January 2022 resulted in paralysis of one leg and difficulty speaking. Despite her condition, she is not receiving regular medication.
As Momo ages, he may experience malaria-related crises, but they are not likely to be fatal. He will continue to face a lifelong risk of viral hepatitis. It is possible that he may reach puberty later than his peers. Recent studies have shown a possible genetic link to leg ulcers, so Momo may start wearing compression bandages as a preventive measure. In the future, he will also have to consider the fact that stress, whether from relationships or work, could potentially trigger crises. All of this seemed distant until I saw Momo kissing a T rex puppet during Christmas in Mbaise, and he explained that he was “being romantic.”
Even now, Nkechi’s loved ones generally disapprove of inter-tribal marriages. However, they acknowledge that Momo does not exhibit traits of someone with sickle cell anemia. At Nkechi’s sister’s wedding in Mbaise, a family acquaintance, Sunny Opara, shared his belief that “educated individuals” should not risk having children with the SS genotype. I mentioned that Momo’s quality of life was significantly better than previous generations affected by the disease, but Opara maintained that “prevention is better than cure”. As Momo energetically roamed around the house, surrounded by four generations of adoring family members, I couldn’t help but wonder what everyone truly desired: a world where Nkechi chose the socially responsible option of ending her relationship with Subomi, or the reality we live in now where she took a chance.
The initial version of this article was published in Harper’s magazine.
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