Silent pain of sickle cell anemia: Mothers unyielding love as they give their children fighting chance

Jenifer Adhiambo Ayara, mother with of two sickle cell children during the interview at their home in Rongai on Feb 14, 2025. [Jenipher Wachie, Standard] "Do not bring your corpse-like children into our family." My sister-in-law's harsh words pierced the air as I sat in the hospital, cradling my two children. Her cruel remark struck deeper than any physical wound. I wasn't just hurt; I was shattered, overwhelmed with the painful knowledge that I never asked for my children to be sick. Jeniffer Adhiambo Ayara, a 27-year-old mother from Ahero, Kisumu County, is a woman caught in the relentless storm of parenting two young children, both living with sickle cell anemia. Her daughter, five years old, and her son, just over a year old, fight daily battles with a disease that has stolen so much of their childhood. As Jeniffer recounts her story, tears roll down her cheeks, each drop a testament to the unrelenting emotional weight she carries. Her journey began when her daughter was just nine months old, and Jeniffer began to notice a troubling pattern in her child's health. "She would fall sick repeatedly, and no matter how much I tried to understand, I couldn't figure out what was wrong," Jeniffer recalls softly, the pain still raw in her voice. It wasn't until a series of hospital visits that the pieces of the puzzle began to fall into place. "Her blood levels were dangerously low, her haemoglobin was critically low, and she kept complaining of relentless headaches. All these signs pointed directly to sickle cell anaemia," Jeniffer says, the memory still vivid in her mind. It was at Kenyatta National Hospital where Jeniffer first sought professional help. The doctors recommended a more thorough blood screening to confirm her daughter's condition. Fearing the worst, Jeniffer chose to have the test done at Nairobi Women's Hospital, a decision that came with a steep price tag of Sh10,000-a financial burden she could hardly bear but one she had no choice but to shoulder. "I was financially drained, but I had no other option," Jennifer admits, her voice breaking. READ: Why Sickle Cell disease is not death sentence Two weeks later, the results arrived, confirming the dreaded diagnosis: her daughter had sickle cell anemia. "I cried when I got the news. I had only heard about sickle cell in high school, but never in a million years did I imagine my own child would be affected," she says, wiping away a tear as the memory still stings. The diagnosis felt like a crushing blow, especially since sickle cell anaemia wasn't a condition that ran in her family. The doctor explained that sickle cell is genetic, and that Jeniffer might have inherited the trait from a distant relative. Despite her confusion, Jeniffer now believes the trait may have come from her late grandmother, who had long suffered from mysterious body aches and severe headaches, but never sought medical help. Mother with Sickle cell children Jacinta Onyango during the interview at their home in Rongai on Feb 14, 2025. [Jenipher Wachie, Standard] "She would lie down for days, barely able to move, and then, somehow, she'd summon the strength to get up and continue with her daily chores," Jeniffer recalls, her voice soft and distant as she speaks of her grandmother. Despite enduring constant pain, her grandmother never sought medical help or took any medication. She quietly carried the burden, never uttering a word of complaint, until she passed away at the age of 93, having endured a lifetime of suffering in silence. For Jeniffer, this quiet endurance was something she had to learn to live with when her own child was diagnosed with sickle cell anaemia. The news was a harsh reality, one she struggled to accept. It wasn't easy to adjust to the idea of caring for a child with such a demanding and unpredictable illness, but over time, she found herself adapting. Caring for her daughter became a delicate dance of constant hospital visits and medication routines. "Some days, she'd wake up and seem fine, but by evening, she'd be in pain again. She'd complain of headaches, bone pain, and it was hard to understand the full extent of her suffering because she was too young," Jeniffer explains, reflecting on the erratic nature of the disease that governed their lives. Her daughter's treatment was a complicated regimen. It included hydroxyurea, folic acid, Penve, and zinc, with clinic visits every few weeks for regular checkups. "Each clinic visit was a financial strain," Jeniffer says, the weight of the costs evident in her voice. "It would cost me around Sh650 just for a consultation with the doctor. Then, there were the lab tests, which would add another Sh4,500 on top of that." ALSO READ: They said I won't make it past 18, says sickle cell anaemia survivor As if caring for one child with sickle cell anaemia wasn't already difficult enough, Jeniffer soon found herself facing the same diagnosis for her second child. "The costs are overwhelming. For both of them, I spend about Sh16,000 every month on medication alone. Each clinic visit costs me Sh8,000 for just one child," she admits. Hydroxyurea, the life-saving medication, is especially expensive for her youngest. "Since he's still on the syrup, it's even more costly. A single bottle of hydroxyurea can set me back Sh2,500, and that's every two weeks," she adds. To manage the financial burden, Jennifer tries to space out the clinic visits as much as possible, sometimes asking the doctor to prescribe enough medicine to last for three months instead of just one. "It's a balancing act," she says, the exhaustion of managing two children with such a condition evident in her tone. The emotional toll has been just as heavy, especially when Jennifer was first told that her second child might also inherit sickle cell anaemia. "I was overwhelmed with concern and uncertainty. With my firstborn, my husband didn't want to accept that she had sickle cell. It caused tension between us, a lot of strain on our relationship," she says. "But as a mother, it's different. When your child is in pain, you feel it in every part of your body. I could never walk away from that." From the very beginning, Jeniffer found herself navigating this new reality alone. It was always her who took their daughter to the hospital, attended the clinic appointments, and absorbed the crushing weight of the diagnosis. "The doctor would explain things to me, but my husband never came with me. It took him a long time to accept the truth about our daughter's condition. As a mother, you're the one who carries that burden. You don't have a choice," Jeniffer reflects. Despite her isolation, Jeniffer's love for her children and her unwavering commitment to their care never faltered. Each hospital visit, each dose of medication, each sleepless night was a reflection of the fierce love she has for them-no matter the cost, no matter the pain. It wasn't until she was pregnant with her second child that Jennifer's husband began to come to terms with the reality of the situation. "When I gave birth to my second child, that's when he accepted that both of our children had sickle cell," she says. But by then, their relationship had already started to deteriorate. Her husband had begun becoming abusive, and they separated when her second-born was just two months old. Reflection of survival As we step into her modest Nyumba Kumi-style house in Rongai, Jacinter greets us with the warmth of the sun despite the weight of her grief. The space is small, a humble reflection of survival. Jacinter lives here with her 17-year-old daughter, her 7-year-old son, and the memory of a 12-year-old son, Kennedy, who passed away due to the 2024 protests against the Finance Bill. Her 17-year-old daughter is enduring the hardships of sickle cell anaemia, her frail body a testament to her pain. "When she was diagnosed with sickle cell, the doctors told me she wouldn't live long. She was just five years old then, and she heard them say it. Every morning, she would wake up and ask me, 'Is today the day I die?" Jacinter recalls, her voice trembling. The disease has not only weakened her daughter's body but has also taken a toll on her mental well-being. "She doesn't feel like a normal child. She knows she is different, and it weighs her down," Jacinter says. When she first learned that her daughter had sickle cell, her first husband outright denied the children, dismissing them as "sickly" and refusing to take responsibility. It was only when she remarried that she found a more supportive partner. Her second husband not only accepted her children but stood by her when their youngest son was also diagnosed with sickle cell. "Things have been even tougher since Kennedy died. Between court cases and the burial, I had to take months off work, and when I tried to go back, I couldn't get my footing again," she says. Accessing medication for her sick children is another challenge. She relies on Vitaglobin, which costs Sh400 per bottle, but it is often out of reach financially. She has to order it from Migori, and many times, she simply cannot afford it. Sickle cell disease (SCD) is a significant public health concern in Kenya, with approximately 14,000 children born with the condition each year. Without appropriate intervention, an estimated 50 per cent to 90 per cent of these children may not survive past their fifth birthday. The prevalence of SCD varies across different regions of the country, particularly in areas with high malaria transmission, where the sickle cell trait offers some protective advantage against malaria. In western Kenya, about 4.5 per cent of children are born with SCD, and 18 per cent carry the sickle cell trait. Similarly, in Kisumu County, approximately 21 per cent of children are born with the sickle cell trait. In response to this health challenge, the Ministry of Health has launched initiatives such as the "Sickle Cell Diseases Afya Dhabiti Project" to enhance care for individuals living with SCD. Additionally, in July 2021, the Ministry introduced the first national guidelines for the control and management of sickle cell disease, emphasising the importance of early diagnosis through newborn screening. Despite these efforts, challenges remain, including limited awareness, inadequate diagnostic facilities, and insufficient access to comprehensive care. While various treatments help manage symptoms, one of the most promising options for a potential cure is a bone marrow transplant (BMT). Dr Boniface Githaiga, a specialist in haematology and bone marrow transplantation, explains the process, risks, and feasibility of BMT for sickle cell patients. A bone marrow transplant involves replacing defective bone marrow in a sickle cell patient with healthy stem cells from a donor. The procedure, also known as an allogeneic BMT, is typically performed using stem cells from a matched sibling who does not have the disease. "The process begins with high-dose chemotherapy to eliminate the patient's existing bone marrow, which cannot recover on its own. The donor's healthy bone marrow is then transplanted into the patient to rescue and restore the blood cell production system," explains Dr Githaiga. The best candidates for BMT are those who have a fully matched sibling donor. The matching process involves Human Leukocyte Antigen (HLA) typing, which determines compatibility. "If a sickle cell patient has a sibling who is HLA-matched and does not carry the disease, they have a better chance of a successful transplant with fewer complications," he adds. Not all sickle cell patients qualify for a bone marrow transplant. The procedure is primarily recommended for those with severe and recurrent complications, including multiple hospital admissions (five or more per year) due to painful crises or infections, a history of stroke or high risk of stroke, persistent organ damage or recurrent acute chest syndrome despite medical treatment, and the inability to manage the disease effectively with medications. Despite these challenges, progress is being made. KEMRI, in collaboration with the Ministry of Health and international researchers, is working to improve screening, treatment access, and patient support systems. Dr Uyoga remains hopeful that with sustained investment and awareness, Kenya can bridge the gap in sickle cell care and give patients a better quality of life. The World Health Organisation (WHO) estimates that over 300,000 infants are born annually with SCD worldwide, with the majority of these births occurring in Africa. Participants march in Kisii town to mark World Sickle Cell disease day. [File, Standard] In some African countries, up to 2 per cent of all births are affected by SCD, contributing substantially to infant and child mortality. The relationship between sickle cell trait and malaria resistance was first elucidated by Dr Anthony Clifford Allison in the 1950s. The advocate's son's struggle with SCD fuels her fight against the disease For Selina Ogweno, the fight against sickle cell disease is deeply personal. As the CEO of the Children Sickle Cell Foundation and a mother to a 20-year-old son living with the condition, she understands firsthand the struggles families face. Her advocacy journey began after discovering her son's diagnosis, a moment that changed her life and inspired her to support other parents navigating the challenges of sickle cell management. "Many parents, especially mothers, feel lost when they first receive the diagnosis. They don't know where to turn for help or how to manage the condition. I wanted to change that," Ogweno explains. Through the foundation, she works to improve access to treatment, educate caregivers, and advocate for better healthcare policies for sickle cell patients. One of the biggest obstacles, she says, is the affordability of medication, particularly hydroxyurea-the gold-standard treatment for sickle cell. "We've managed to get hydroxyurea at a subsidised rate of 15 shillings per capsule, down from 30 or more, but even that is still expensive for some families," she notes. Her foundation has also established sickle cell clinics in high-burden areas, including Nairobi's Mathare, Korogocho, and Athi River, as well as partnering with hospitals in Kisumu, Migori, and Mombasa. These clinics offer subsidised treatment, patient education, and scheduled follow-ups to ensure that both children and adults with sickle cell receive consistent care. But access to healthcare is just one piece of the puzzle. Stigma, misinformation, and family tensions often make life even harder for sickle cell patients. Ogweno recalls heartbreaking cases of mothers being blamed by their partners for giving birth to children with sickle cell, leading to domestic abuse and abandonment. "Many fathers refuse to accept the reality that they, too, might be carriers of the sickle cell trait," she says. Beyond treatment, Ogweno stresses the importance of correct disease management. She has encountered many cases where parents unknowingly give their children the wrong medication, such as iron supplements, which can lead to dangerous iron overload. "Sickle cell patients don't typically suffer from iron deficiency. What they need most is folic acid and hydroxyurea, which helps boost fetal haemoglobin levels and reduce the frequency of pain crises," she explains. Her work also extends to training healthcare professionals, as mismanagement of sickle cell is common due to a lack of awareness among doctors. "We've partnered with hospitals to train doctors on proper sickle cell care, and sometimes they even call us for guidance on difficult cases," she says. Despite the challenges, Ogweno remains hopeful. She believes that education and early diagnosis are key to improving the lives of sickle cell patients. "The only prevention we have is knowledge. If people understand the genetics behind sickle cell, they can make informed decisions about their families. We need more awareness, more support, and above all, dignity in care." Her message to the public is simple: "These children are not weak. They are fighters. What they need is support, understanding, and proper medical care to live full, meaningful lives."

Silent pain of sickle cell anemia: Mothers unyielding love as they give their children fighting chance

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Silent pain of sickle cell anemia: Mothers unyielding love as they give their children fighting chance

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