Caring for a Child with Sickle Cell Disease
June 21, 2025
CARING FOR A CHILD WITH SICKLE CELL DISEASE
Winny travels to Lacor Hospital every month with her daughter Jemima to receive treatment for sickle cell disease. Jemima was born on April 29, 2020. She was a healthy baby until the age of three when she began crying constantly and having joint pain in her right arm.
Concerned, Winny took Jemima to their local hospital. She was tested for malaria and HIV, but both tests were negative. She was then tested for sickle cell disease, and it was immediately confirmed.
Winny was told that if she wanted the best care for her child, she should take her to Lacor Hospital. This meant a lot of traveling for Winny and Jemima. Pakwach, where they live, is a town on the western bank of the Nile River. It is located 75 miles from Lacor.
Once a month, Winny and Jemima make the journey to Lacor Hospital for Jemima’s treatment. Their 75-mile journey typically takes about five hours. They leave the day before Jemima’s appointments and stay overnight in Gulu. The following day, depending on how long they wait to see a doctor, they either travel back or stay another night before returning home.
The standard procedure for sickle cell checkups begins with patient intake, where the child’s vitals are recorded. Next, blood is drawn in the lab to assess kidney and liver function. Patients then wait to be seen by a clinical officer.
Today, Jemima was seen by a clinical officer named Gloria. I was fortunate to spend some time speaking with Winny before the appointment, and she invited me to stay for the checkup. Gloria measured Jemima’s oxygen saturation using a pulse oximeter and then listened to her heart with her stethoscope. I loved watching her warm her stethoscope by rubbing it on her lab coat so it wasn’t cold when she placed it on Jamima’s chest. It’s the little things that count!
Winny carried with her a special booklet given to her when Jemima first began treatment. It records Jemima’s health information at each visit, along with prescription details and dates for follow-up appointments. Patients are asked to return regularly for ongoing monitoring and medication.
After the checkup, children are either prescribed hydroxyurea, the drug Lacor uses to treat sickle cell disease or admitted to the Hospital if their condition is severe. Children under the age of five receive free treatment at Lacor Hospital.
A delighted Jemima and her mother left Lacor smiling and told Gloria they would see her again next month.
