KUALA LUMPUR: As Muhammad Yusuff Mohd Hambali tests his limits, trying to wiggle behind a stubborn row of hospital chairs, it’s hard to believe that the two-year-old was at death’s door a year ago.
He is now cured from severe combined immunodeficiency syndrome (SCID) but Yusuff’s doctor and parents remembers a dark period before he underwent the transplant that saved him.
The haploidentical bone marrow transplantation developed by physicians and doctors in John Hopkins Medicine, United States allows half matched donor cells to be accepted by their host cells; meaning Yusuff, an only child at that point was in luck.
His parents were naturally qualified donors. But while his father Mohd Hambali Din @ Ismail was ready to do anything for his son, there were a number of complications.
University Malaya Medical Centre (UMMC) senior consultant pediatric oncologist Prof Dr Hany Mohd Ariffin said SCID had stripped Yusuff’s immunity by the time he came to her at the age of 10 months.
“He weighed 5kg and was so frail. He came in with pneumonia and his buttocks were raw from chronic diarrhoea as he passed motion up to 15 times a day.”
“Yusuff also had a disseminated BGC (Bacillus Calmette–Guérin) which caused the live microbacteria meant to give him some immunity to spread to his skin, it also threatened to travel to his brain and other parts of his body.”
“This is because he had no working immune system at the point,” she said at the one year anniversary celebration of the child’s transplant.
The medical staff began a pre-transplant regime by treating his pneumonia, infections, administering anti tuberculosis drugs (for the BCG dissemination) and force feeding him until he weighed 7kg. All the time Yusuff was placed in squeaky clean transplant ward.
Following the procedure Yusuff also spent 150 days in the hospital.
“It went smoothly at first but after sometime he developed infections and there was some incompatibility between two cells.”
“He was warded in the intensive care unit twice and he had to be put on ventilator twice due to infections and complications. To think the number of times we almost lost him,” she added.
The elated doctor’s voice earlier broke while she related Yusuff’s journey to the small gathering who celebrated their success.
“The impact to science is that I don’t have to turn away parents on the basis that they do not have a child with matched cells. I think of all the parents I can help now compared to all the children I had to let go previously,” she said.
Yusuff’s mother Adurantun Nasyihin Mokhtar, 30, said her ordeal began when her boy was seven month old and diagnosed with cough.
“But even after three months including one spent in Slim River Hospital where he was pumped with antibiotics, he was still not getting better. That’s when we came here (Universiti Malaya Medical Centre and the doctor’s diagnosed him with SCID,”
“We were depressed at first but we never gave up hope. We trusted Dr Hany wholeheartedly,” she added.
Yusuff’s parents went through much during the period. Adurantun who is a teacher in Slim River was five months pregnant when Yusuff was wheeled in for his transplant.
She had taken two years leave to be by Yusuff’s side while her husband who is also a teacher was forced to travel to Slim River daily.
“I did my research and found out it was treatable. We never gave up or lost hope. We always knew he will make it.” added Mohd Hambali.