Enzi Glory was diagnosed shortly after birth with Sickle Cell Anemia. Her parents brought her to emergency rooms every time she had a fever during the first few months of her life. She had never been to a hospital, but her parents couldn’t imagine a life filled with constant worry and uncertainty.
Glory, a 7-year-old girl with a low platelet count, was born. Two tests were not conclusive for sickle-cell disease, but a final test confirmed the diagnosis. She started seeing a hematologist in Dar es Salaam, Tanzania where her family lived at the time.
Glory’s mom, stela says, “I had heard about treatment for sickle-cell anemia from a friend of mine who had inherited the condition.”
When I told my hematologist, he said that it is only performed if there are a lot pain crises. Because it was 2016, the procedure was not common in Tanzania at the time.
Patients with this condition have red blood cells that are malformed and hard. They do not produce enough hemoglobin – the protein responsible for transporting oxygen around the body. Patients with the condition may suffer from pain, infections, damage to organs, and in some cases early death.
Glory was taken to the emergency room every time she got a fever, to ensure she did not have a potentially life-threatening infection. People with sickle cell, and especially children, can be at risk of deadly bacterial infection because sickle-shaped rbcs damage the spleen. The lungs are also affected. Glory’s fevers, fortunately, were caused by a common cold. Stela says, “I’m grateful she didn’t need to be hospitalized.” The family was worried that Glory might have a major health scare.
We gave her medication for a while, but it didn’t work. She was about 5 years old, and had terrible pains in her legs and stomach. Her health began to deteriorate. Our doctor informed us later that Glory was experiencing a sickle crises and could recur at any moment. When we asked about treatment options, they told us there were none.
Glory returned home and settled down after a few weeks. We all realized that her condition could get worse in the future if the doctors’ treatment was not effective. We decided to search for a specific treatment. We found the MedSurgeIndia medical assistance channel from a patient who underwent a successful treatment for sickle cell disease with bone marrow transplantation. This is also known as Stem Cell Transplantation. Dr. Vikas dua, an Indian doctor, was the supervisor. The Bone Marrow Transplant rate of success in India appears to be very high. Later, we looked up more information about the doctor on the Medsurge site and found that he is a specialist in treating children with Sickle Cell Anemia and has successfully performed over 400 bone-marrow transplants.
We were encouraged by the video and biography of the doctor. We sent him a question along with our recent medical records and received a prompt and comprehensive response. The online team has set up an immediate video consult with the doctor.
He told us that we needed to test the sibling and parents of the patient as well as their Human Leukocyte Antigens (HLA). The doctor and MedsurgeIndia sent us HLA kits, and we were instructed to collect samples using the swabs provided in the package. The samples were sent to a certified research laboratory for testing. We were lucky that Glory and Giana Enzi were a perfect match. We asked not only about the method of treatment, but also the services, hospital facilities and assistance that Medsurge would provide us in India.
After much discussion and consideration, we decided to travel to India to receive our daughter’s bone-marrow transplant. The MedsurgeIndia team took us in comfort from the airport to the guesthouse when we arrived in India. We were excited and nervous to meet Dr. Vikas dua, as we were still worried about the transplant. We were all so worried about our extended stay, the healing process, and treatment that we couldn’t sleep. We met with the entire team at MedsurgeIndia who explained everything to us in greater detail. He told us that God sent you to this place and that your child would get better. The last line of the doctor inspired us with confidence that we could continue to treat our child.
Following a series pre-evaluation tests, both Glory and her matching sibling were evaluated. Stem cells from Glory’s sister were then collected. This is a safe and simple process, similar to blood donation. Glory received chemotherapy to remove her sickle-cells, then a bone marrow transfusion in which healthy stem cell were extracted and infused back into her blood. Her new stem cells started to multiply after a few weeks. I prayed throughout the treatment. We thank God for the smooth procedure, even though there were many ups and downsides. The doctor had informed us at every stage of the process.
After a month in the hospital, we were discharged. We stayed close to the hospital for two more months as we were told to go weekly for checkups and do follow-up tests.
Our daughter is now extremely thin and her immunity has decreased significantly, but she’s slowly returning to normal. We learned so much about life during this period.
Our final departure from India was finally here, after a long, but rewarding wait. We were all excited, especially the children, who missed their family and home. Our daughters’ health was improving and we were delighted. The doctor told us to stay in regular contact with him through WhatsApp, and to send him all pertinent information and medical reports on a frequent basis. With the help of Medsurge, we flew from India to Tanzania in comfort. Dr. Vikas, his team and their support were fantastic! As a result, our daughter can now live a normal and active life.
Special Note
Stela said, “Thanks for your medical assistance and services from Medsurge India. Your efforts have made it possible for my daughter to live a long and healthy life.
Little Glory ” I would like to thank Dr. Vikas and the MedSurge Team for this wonderful Gift. You are my angel .”
Q: Why did you choose Fortis as your care provider?
A : Stela says, “Fortis made me feel safe.” “They were very knowledgeable about all things. They answered every question we asked and, while there were never any guarantees, they told us the truth. “I felt confident entrusting my daughter’s future to them.”
Q: Was the decision to undergo a bone marrow transplant a difficult one?
A : Stela and her husband debated if they should do it. Our faith in God and our constant worry that something terrible would happen one day led us to make this decision. We wanted Glory to be able to live without fear. My friend’s college friend died from sickle cell problems. I did not want her to have to endure that much for the sake of my child. It also helped when I found online support groups and read other people’s stories. I sent two mothers a message asking for their opinions.”
Q: What was the most common side-effect Glory experienced after her bone marrow transplant?
A:infections, as Dr.Vikas stated, are the most prevalent. As a result, later infections like viral, fungal and other diseases may develop. Glory developed bacterial infections weeks or months after the transplant. The doctor prescribed a prescription as well as a list to preventative measures. This was immediately treated. Infections may prolong hospital stays, delay or block engraftment and damage organs. They can even cause death.
Q: What is the HLA testing procedure?
A: The needle is inserted in a vein on your arm to obtain a sample of blood. Sometimes a buccal swab is used to test. This is a small swab taken from inside your cheek. Both approaches do not require any special preparation.
