In the United States, about 2,000 babies are born each year with Sickle Cell disease. In Sierra Leone, a small country in West Africa, the number is 5,000 babies.
Interestingly, the fate of these babies is largely determined even before they are born. Up to 90 percent of the babies will die before their 5th birthday because of anemia, malaria and bacterial infections.
Overcoming these health challenges for babies with sickle cell disease only require small feasible steps like early screening at birth, regular use of penicillin, folic acid, vitamins and ibuprofen, as well as educating parents about the disease
Dr. Cheedy Jaja, a psychiatric and mental health nurse practitioner and an associate professor of nursing at the University of Cincinnati, is a man on a mission to create better awareness of the disease in Sierra Leone.
In July, 2017, Cheedy and his team opened the first clinic in the country to provide care for children with sickle cell disease. The Sickle Cell clinic provides free monthly health exams for 120 children with the disease. They educate the parents, and provide the medications for the children. Each child receives and must return monthly to refill the medications. Cheedy and his colleagues wanted to focus on children to help them and their families manage the condition and live as normal a life as possible.
With support from the International Organization for Migration, Cheedy has now started a pilot newborn screening program at a provincial government hospital in the country. On January 1, 2018, babies within a few hours of birth were screened for sickle cell disease with a point-of-care device called the Sickle SCAN™. The clinician takes a small drop of blood, and tests it in the Sickle SCAN. The family will know within minutes if their child has Sickle Cell disease and they will be counselled about the disease and how to seek care.
Cheedy hopes that in the next 12 to 24 months, these two nascent sickle cell programs will collect definitive data on whether or not the simple interventions made a difference in the children’s lives. If the result shows that the interventions had positive impact on the children’ health and wellbeing, his team and collaborators will use these programs as blueprints to show the Sierra Leone government how care for children with SCD patients can be provided.