Beta Thalassemia | Zayed’s Story
The family came for a consultation and Zayed was a delightful little boy at the time. He was diagnosed as an infant. He was getting chronic blood transfusions and for the most part, was actually pretty healthy. While they don’t need chemotherapy, patients with beta-thalassemia require lifelong transfusions in order to live healthy lives. A blood stem cell transplant using blood stem cells from a healthy donor can help take away the need of these patients requiring lifelong red blood cell transfusions. We thought of sending Zayed to America.He was about four or five years old. At that time, we had a new baby, Mohamed.
We saved the placenta stem cells and then we decided it was the right time to move Zayed to Johns Hopkins Hospital in Maryland. The family went on to collect the cord blood, or placenta stem cells,at the time of Mohamed’s birth and then they were frozen and stored in a private cord blood bank in Dubai, actually. So, when Zayed came for a consultation,we knew also that it turned out Mohamed was a full match. Although not identical twins,the two brothers were what we call HLA-identical, so that was terrific. He spent probably a month or two here, prior to the transplant, for us to get to know Zayed—make sure he was healthy. Confirm he had an underlying diagnosis that was—could be treatable successfully with a blood stem cell transplant. Work up his donor, Mohamed. Make sure he, in fact, was healthy.
And, coordinate the identification and shipment of the cord blood probably added several weeks to the pre-transplant stay. In the end, because the cord blood was not quite sizeable enough to be used alone, we actually used a combination of cord blood stem cells with bone marrow stem cells that we ultimately collected from Zayed’s brother, Mohamed,as part of the blood stem cell procedure. After everything that the patient has gone through and the family,we want to make sure that that patient is really healthy and doing well as we establish contact with referring physicians to make sure when they go back to the United Arab Emirates, in this case, that that is a very smooth transition of care. When we arrived in America and after seeing the doctor, he welcomed us with respect and appreciation and treated Zayed as if he was his kid.
My journey with Zayed continues to evolve over the course of time here now.I always look forward to seeing the family, the boys. You get the chance to see them grow up. You get the chance to see them go to school. That is a really special part of this role because in the end, our goal here is, again, this life-changing, life-altering, life-saving procedure. We want that to lead up to happily-ever-after and we can only do that through collaborative efforts not only here within the institution but also throughout the international footprint that Hopkins continues to serve so well. Johns Hopkins Hospital is one of the best hospitals in the world. We read about it. We were going to another hospital in the beginning, but we changed our minds. I can say that this hospital is excellent.