By: Tonjeh Bah, MD
The hours were long, but the experience was very rewarding.
The month of January 2020 was spent in Karuma, Uganda, a small village in the bush, training and volunteering at the Restoration Gateway hospital, where I took care of patients with sickle cell anemia and other blood diseases. Restoration Gateway is a mission community located on 700 acres along the Nile River, with a 180- bed hospital, an orphanage, empowerment program and ministry in a war-torn area of northern Uganda. Feist-Weiller Cancer Center sent me to offer service to their patients. This trip helped initiate an international collaboration between the Feist-Weiller Cancer Center and Uganda. It was an experience I will never forget.
Medical missions were always one of my dreams. When I found out about Restoration Gateway and their need for a blood/sickle cell specialist, I felt this was my chance to do what I have always wanted- to humbly serve and teach others. My desire was to learn from the Ugandans. I wanted to learn how they practice medicine with limited resources. My goal was to serve and educate the patients and staff about sickle cell anemia and its management. I love little tricks-I wanted to teach them the tricks on how to stay healthy.
Most of my time was spent serving in the Restoration Gateway hospital. Our day started at 7:30 am with morning devotions for the patients and was led by one of the staff. After devotions, we rounded on the patients and then headed to the outpatient clinic, which served as our ER and clinic. Patients traveled long distances and waited many hours to be seen. Clinic ended after all the patients were seen. The hours were long, but the experience was very rewarding.
One of the “Miracles” I witnessed while I was in Uganda was with a little 3-year-old girl named Daniella. She was admitted for sickle cell pain crisis the week before I came to Uganda. She was very sick and we were not sure she would make it. Her mother (who was a widow before Daniella turned one) was at her bed just waiting to lose another child. When I tried to inquire about how she ended up in the hospital, the mother told me she had 11 children, 7 had died from sickle cell and she was just waiting on Daniella to die. Listening to her story broke my heart. I gazed at her, gave her a gentle touch and in my heart I said this simple prayer, “Please God heal her daughter.” Together with the team, we made changes to her treatment plan and as days went by, Daniella dramatically improved. She was eventually weaned off oxygen and discharged home with her mother. She had to learn to walk again, because she had been bedridden for almost 2 weeks. Her mother was happy to go home with her daughter.
The management of sickle cell in the United States has evolved over the years. The patients in the US used to die before their teenage years, but with the advent of folic acid, penicillin and hydroxyurea, they have a better survival rate. These medications have drastically improved life expectancy and quality of life in patients with sickle cell. One of my patients here at the Feist-Weiller Cancer Center clinic will be turning 60 years old soon, while my oldest patient in Uganda was only 21 years old. Hydroxyurea costs about $200-$400 a month depending on the patient’s dose. This amount is equivalent to 6 months household income in Karuma, Uganda.
I think we can do something to help these patients. Supplying the hospital with the right medication will make all the difference for their sickle cell patients- between life and death. If we had sponsors, we could give these patients the gift of life-a chance to live into their 30’s or 40’s, which would be the greatest gift they could ever ask for.
There are great opportunities for research that will improve the health of the Ugandans. In our sickle cell population, we can study the changes in admission and death rate after starting hydroxyurea or after compliance on folic acid and penicillin. There were some rare forms of other anemia that I saw while I was in Uganda. If we have appropriate funding to run specific labs and data, we can study these patients and eventually determine the right treatment necessary to improve their overall health.
At Feist-Weiller Cancer Center, we are well trained to take care of patients with any form of anemia. We are a center specialized in sickle cell patient care and we see patients from every part of Louisiana and some even come from Texas. Going to Uganda to take care of their patients with anemia and sickle cell was just a continuation of my day to day life at the FWCC. The Feist-Weiller Cancer Center gave me a strong foundation in management of patients with sickle cell.
The lessons I learned during my time at Restoration Gateway are to be thankful for every new day. Sometimes I take for granted the fact that I have a roof over my head, a comfortable bed to lie on and food to eat. Seeing patients going to bed without food was so heart breaking. Never underestimate your blessings.
Tonjeh Mary Stella Bah, MD is a clinical fellow in hematology oncology at the Feist-Weiller Cancer Center. She is the Chief Fellow at FWCC for 2019-2020.