Laryngo Tracheal Malasia

[Anonymous]

My son had a TE Fistula repair at 2 days old was placed on prevacid to help prevent acid relux which is very common in babies with the repair. he also had a fundoplication done at 4 weeks for the reflux because it was so bad that he was choking and sometimes passed out. Since we was first born we noticed that after he was not entabated anymore that he had this noise. like he was hoarse. the doctor said that he sound that for about a week from all the tubes being down his throat and stuff. Well it never went away. When he went in for the fundoplication at 4 weeks we mentioned that he still was making the sounds. At that time an ENT did an airway scope and discovered that he has Laryngo & Tracheal Malasia. he also has a strider along with that. the doctor said that since he has both conditions of Malasia that it would be about 18-24 months before he’d outgrow it. Sometimes I wonder because it seems like it’s worse at times. He recently just got over having pneumonia. But since Thanksgiving hes been acting like he’s having problems while he’s eating. He keeps acting like he’s gagging and sometimes chokes. I’m feeding the exact same way I always have. Could the baby food be too thick or too runny at times? I’m not sure. The ENT is going to perform a bronchioscope on him around the beginning of april to see how his airway he doing. He doesn’t want to do it now with it being RSV season and with him just getting over the pneumonia. Does anyone have any advice?

[Anonymous]

Welcome to the site! Alex had this, but she outgrew hers without any major issues, so I don’t really have any good advice. Hopefully someone else will be able to help!

[Anonymous]

Hey, Im a 23year old mother of three and I know what ur going through my second son in now 19 months old, he was also had a TEF repair @ 3 days old besides that he had a tracheal malesia that required for him to have a treacheotomi done, to this date he still has the traich.

It was really hard at the beganing since I live by my self and have no kind of family support, but the most important thing is that I have learend the value of a child my kid to me is not a problem as many people may think yeah his feeding has always been an issue.

But not a problem, he tries to eat everything his older brother eats and 99% of the time is not possible with a traich its kind of hard to swallow and I guess all I try to put throught my head is that eating with a finger in your mouth its not fun so thats preaty much what he is feeling, so I do allow him to try some things but always with caution ,

I think that what you need to do is have paitients and dont go hard on ur self remember it takes a special parent to have a special child and God cant go wrong so allow ur son to experience foods with caution and remember it can only get better. Times r hard but you need to stand strong.

Hope I was so type of help.

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