It was a year ago when I heard about Akansha, a little girl, who was treated in Muscat, Oman for Thalassemia.
The true life story began when 4 year old Akansha from Dubai was diagnosed to have Thalassemia, a blood disorder, when she was barely 1 year old. Her parents realized the only way their child can be saved was by giving her a bone marrow or umbilical cord blood transplant from her own sibling.
For this to happen, parents needed to have another child with same genetic make up, HLA (human leukocyte antigen) type matching. They could not take a chance, leave things to nature and expect to have a baby which matched their child’s HLA type on their own. They poured over medical journals, did Internet research and consulted several medical professionals.
Finally they found a place in Chicago which specialized in Pre-Implantation Genetic Diagnosis. This technique allows parents to choose the exact genetic make up of the embryo and free of disease. They decided to have in vitro fertilization and the chosen embryo that had exact genetic make up as their child would then be implanted into the uterus.
Nine months later they had a baby who had the same HLA type as her older sister. When the new baby was born, her umbilical cord blood was collected and sent to New England Cord Blood Bank, for storage.
Meantime, older sibling was being worked up for cord blood transplant in Muscat. The stored cord blood was shipped from New England Cord blood bank to Muscat. As the amount of cord blood was slightly low, some bone marrow was also aspirated from the baby and was given to her sister along with the cord blood.
It was a success!!!
Parents unsurpassed dedication to their 4 year old child had paid off. The new technology in Chicago combined with the treatment facility in Muscat, gave the child a chance to lead a normal life. Otherwise Imagine a four year old girl requiring blood transfusion all her life!
Life long blood transfusions has its own drawbacks too, such as excess of Iron in the body which could damage the vital organs and could kill a patient. Moreover, if these patients with thalassemia are not properly managed, they could die of cardiac illness in their late teens.
But the transplant this child received has avoided all those side effects. It will be a year before her own body develops healthy defense system. This is not unusual because all patients who receive transplant go through this process. She needs to be observed closely for several months to come.
It is very gratifying to note that treatment such as what Akansha received can be carried out in Muscat, Oman. Bearing in mind the technology available in Chicago, USA made this all possible.
What is Thalassemia?
Blood cells of beta thalassemia major patient(Photo courtesy: CAF)
There are two types, Thalassemia Major and Thalassemia Minor. These are genetically transmitted blood disorders, specifically affecting the hemoglobin part of the red cells resulting in their low production and destruction.
Genes must be transmitted from both parents to have the ‘major’ form of the disease and if only one parent transmits, then the child becomes a carrier and will be symptom free and this is the ‘minor’ form.
A child with Thalassemia Major may be normal at birth but symptoms begin in their first year. Growth failure, bone deformities, anemia, liver and spleen enlargements are some of the signs and symptoms. Blood transfusions may alleviate some of this but Iron overload is a major concern.
Author: Dr. K. B. Mallya- Canada
