My son Adel is 5. He was diagnosed antenatally at 16 weeks to have pleural effusion in NUH. At 18 weeks we found out in KKH (2nd opinion) that he is also Beta Thalassemia Major and has a big hole in the heart (VSD) requiring repair at birth. I gave birth to him in KKH and at 2 weeks old he undergone 3 heart surgeries the 3rd one being an emergency open heart heart to rectify the 1st & 2nd. He had such traumatic post op experience that both his lungs collapsed. As a result he was on CPAP & O2 for almost 4 years (chronic lungs). He started blood transfusion since his heart surgeries, and due to that, we overlooked aspects of his Thalassemia i.e chelation regime which was not started promptly. We struggled with his multi disciplinary medical needs, keeping him breathing was already difficult
let alone managing the Thalassemia. His spleen and liver got so big, he suffered chronic anemia and hepatosplenomegaly, which required his spleen to be taken out at a tender age of 2. We managed to save his spleen by doing an experimental procedure which worked to shrink his spleen. His spleen was so huge he was suspected of Gaucher, and of course we ran all kinds of tests and all. Then we got our acts together with help of 2 hospitals and Msian doctors and my research with other patients support group abroad and we realised we had mismanaged his Thalassemia. Details that don’t matter to others can make or break my little guy! The heart surgeries caused damaged nerve to his left vocal cord, so his voice was hardly audible until recently. He was PEG fed until after he started eating last year in May @4yo. We had in total 8 GAs the last one was removal/closure of his PEG. He’s been doing extremely well and next year we are going to Bangkok for a reduced intensity bone marrow transplant. The donor is my no.2 son. It will be coordinated and assisted by NUH team. I hope all mummies out there will continue the good job and do their best to help these special chIldren. Your best is good enough! God bless all of you!