When Mrs Aderele Akanbi’s son’s doctor informed her that he would need to take penicillin from the age of three months until he turned five, she found it difficult to accept. The thought of administering antibiotics twice daily for nearly five years seemed excessive.

However, her child’s paediatrician explained the reason. Children living with sickle cell disease are particularly vulnerable to infections because their spleens, which help filter harmful bacteria from the bloodstream, often do not function properly. As a result, they face a significantly higher risk of life-threatening infections, especially pneumonia.

A landmark study published in 1986 showed that administering penicillin to children with sickle cell disease from infancy dramatically reduced pneumonia-related deaths, leading to the current recommendation that penicillin prophylaxis be included in routine care.

President of the Sickle Cell Hope Alive Foundation (SCHAF), Prof. Adeyinka Falusi, speaking at the 2026 World Sickle Cell Day commemoration, said this is one of many reasons why newborn screening should be made available to every child born in Nigeria.

“At two months of age, every child with sickle cell disease should begin penicillin prophylaxis and continue it for the next five years. We should not wait until symptoms such as swollen hands, jaundice, or other complications appear before taking action,” she said.

According to Prof Falusi, universal newborn screening remains one of the most effective strategies for reducing preventable complications and deaths associated with sickle cell disease.

“Every child in Nigeria should have newborn screening. It is important both for building national data and for identifying children with sickle cell disease as early as possible so they can begin treatment immediately,” she said.

She noted that early diagnosis allows healthcare providers to initiate preventive care before severe infections, recurrent pain crises and other complications occur.

Prof. Falusi also highlighted the importance of timely immunisation, regular medical monitoring and access to hydroxyurea therapy, one of the most effective treatments for reducing painful crises and improving blood health among sickle cell patients.

“Doctors prescribe hydroxyurea, but many families cannot afford to purchase it consistently. A mother may buy it once or twice and then stop because of financial difficulties. This should not be the case,” she said.

Hydroxyurea increases foetal haemoglobin levels, helping to reduce the sickling of red blood cells and lowering the frequency of painful crises.

The professor called for greater government investment in newborn screening technology and diagnostic infrastructure.

“Modern newborn screening methods require significant investment. Government support is necessary if we want early diagnosis to become widely accessible,” she said.

She also expressed concern about challenges within Nigeria’s blood transfusion system, noting that many families struggle to obtain safe blood donations during emergencies.

A paediatrician at the University College Hospital (UCH), Ibadan, Dr Amarachi Maduagwu, said early diagnosis enables children to benefit from preventive interventions such as prophylactic antibiotics, enhanced immunisation schedules and routine monitoring.

According to her, enrolling affected children in comprehensive care programmes from infancy helps prevent complications that often lead to disability, poor quality of life and premature death.

“By identifying these children early, we can start care plans that reduce complications. We provide preventive antibiotics, ensure optimum immunisation and monitor them closely for conditions that can become life-threatening if not detected early,” she said.

Dr Maduagwu explained that comprehensive care involves a multidisciplinary approach, bringing together paediatricians, nephrologists, cardiologists, psychologists and other specialists.

She noted that sickle cell disease can affect several organs, including the kidneys, liver, lungs, heart and brain, making regular monitoring essential.

“When a child is recruited into care early, we can identify complications before they become severe. If a patient develops chest pain, headaches or seizures, we immediately investigate serious complications such as acute chest syndrome or stroke,” she said.

The paediatrician said the difference between children who receive early intervention and those who do not is often striking.

She described how children diagnosed shortly after birth benefit from timely treatment, infection prevention and routine follow-up, allowing them to grow and develop more normally. By contrast, many patients who present late often suffer years of untreated complications.

“We sometimes see adolescents who were never properly followed up on. They may be stunted, have recurrent crises, chronic bone complications and avascular necrosis, which is damage to the joints resulting from repeated sickle cell crises,” she said.

Beyond improving patient outcomes, Dr Maduagwu said newborn screening empowers parents with the knowledge and support needed to manage the condition effectively.

“It helps mothers understand the disease and know what to do when their child develops symptoms such as fever. They receive counselling, support and guidance from healthcare providers and organisations working in the sickle cell space,” she said.

She added that early engagement with healthcare providers also allows families to access counselling services, social support programmes and health insurance initiatives that can ease the financial burden of care.

One of her major concerns, however, is the number of patients who miss routine follow-up appointments because they assume hospital visits are only necessary when a child becomes seriously ill.

“People often think that if there is no problem, there is no need to come to the hospital. But follow-up appointments are essential because they allow us to monitor the child, provide education and identify complications before they become severe,” she said.

Dr Maduagwu also warned against self-medication and delaying medical care.

“Fever in a sickle cell disease patient should never be ignored. Parents should not simply go to a pharmacy to buy medications without a proper assessment. Complications can quickly spiral out of control if they are not managed appropriately and on time,” she warned.

Both experts stressed that improving outcomes for people living with sickle cell disease requires more than medical treatment alone.

Prof Falusi emphasised that factors such as access to healthcare, family support, education, nutrition and safe living conditions play a major role in determining health outcomes.

“There are two major factors: genetics and environment. We cannot change the genetics, but we can improve the environment in which people live and receive care,” she said.

She urged parents to ensure that children have access to clean drinking water, proper nutrition and adequate hydration to reduce the risk of infections and complications.

“Something as simple as clean water can make a huge difference. Good nutrition and clean water are powerful preventive tools,” she said.

The experts agreed that early diagnosis, comprehensive care, stronger health systems and greater public awareness remain critical to reducing the burden of sickle cell disease and helping affected children live longer, healthier and more productive lives. (Saturday Tribune)