After fighting off death in India and battling through three days of surgery, the high pitch giggles of five-year-old Haleema Mohammed are once again warmed the hearts of her relatives.
Haleema and her family returned to Trinidad on Tuesday night after she successfully underwent a life-saving bone marrow transplant at the Fortis Memorial Institute for Allogeneic Transplant in Gurgaon, India. Haleema had been diagnosed with Beta Thalassemia Major, a deadly blood disorder which reduces the production of haemoglobin.
Last June, Haleema’s mother, Kristal, applied to the Children’s Life Fund Authority for funding for the surgery. The authority said it would have taken up to three months to consider the case. On August 15, Kristal filed a lawsuit challenging the delay by the authority to consider her urgent application. But in a response the following day, the authority’s board rejected the application on the grounds that Beta Thalassemia Major was not considered a life-threatening illness as required by Section 19(e) of the act guiding its operations.
The family was left to fend for themselves, but within weeks private and corporate citizens poured out their financial support and they were able to raise the funding for the trip and operation.
Although the family is relieved to be home, Kristal told of the harrowing experience of watching her daughter scream from pain and not being able to do anything about it during the process. She recalled that on arrival in India, Haleema’s blood iron level was over 3,000 and climbing. She said the doctors eventually had to order special medicine from Germany as Haleema’s risk of dying was high during this period.
“It was really scary. When we reached in India, the doctors started doing a lot of tests on her heart, lungs and kidneys in preparation for her procedure,” Kristal recalled.
“On the day they inserted the Hickman line in her chest, I cried so much because she was alone in there with people she did not know. She and I are so close and all I could have done was watched. After surgery, she cried for days in pain and she could not even move until she started to heal internally.
“I was so sad to see her go through so much pain that I told the doctors that I did not want to do it any more. But the doctors told us that if we did not see about it now, we could have decided to go back home, but things would get worst.”
Following the surgery on September 29, Haleema’s donor, her brother Haleem, was allowed to leave. However, Haleema endured seven days of chemotherapy which darkened her skin and caused her hair to fall off, Kristal said.
But like the book of Psalms says, joy followed her pain and her recovery came swiftly.
“Words cannot express the way I feel about how the country helped to save my child’s life? I am truly grateful. I pray for everyone and thank everyone for pulling my family through this.”
But Haleema is not fully out of the woods yet and has to continue her medication to ensure her body does not reject the bone marrow. She also has a strict diet and must be in well sanitised surroundings for the next year. As a result, she will not be able to attend school.