Irfan was diagnosed of having laryngomalacia (LM, i think his condition is moderate to severe) on 12/3/2015. We detected something was wrong with him when he was about 6 weeks old - the presence of stridor (noisy breathing), and significant neck and chest retractions when breathing.
Definition of LM: is a congenital softening of the tissues of the larynx above the vocak cords. The tissues are malformed n floppy, causing the tissues to fall over the airway opening n partially block it.
After being referred by his paed, we had our first appmt with Dr Anura, paed ENT at UMSC on 12hb, and she performed scope via Irfan's nose to confirm on the diagnosis. Irfan was given reflux medication to prevent his larynx from getting swollen and worsen when acid reflux happened (GERD/reflux and LM always come
me hand in hand). We will meet up with Dr Anura again in 2 weeks time to check on his progress, which is so depressing as i count the days. Dr Anura was more concern on his neck retractions, which she alarmed on the possibility of having a surgery to correct the situations (ok i cried everytime i think about the surgery, Ya Allah pls give me the strength!).
Now i understand why despite Irfan is having frequent nursing, he did not gain weight as much as he should. He only gained 400g in his first month, and another 430g within the last 2 weeks. He consumed more calories than what the body can takes in his effort to breath. He at times will choke and gag when he drinks too much, and so far has vomitted twice. Poor my baby, may Allah ease your burden and heal your pain amin.
I now join a FB page called 'Copping with Laryngomalacia' for better understanding on this congenital issues. It is a good source of info that parents whose babies and todds are suffering from LM are sharing their experience and concerns pertaining to handling n coping with babies with LM. It is really heart-wrenching the more i read about their stories, but i just couldnt stop myself from wanting to know more about LM so that i can get myself prepared for the worst.
That's all for now peeps. Tak boleh tulis byk2 nnt lg byk air mata mengalir huhu. Pls pray for baby Irfan. He is just to small to cope with this. Your thoughts and prayers are much appreciated. Hugs.
-the Malacia mom-