floppy windpipe

[starlover]

hi

DS (4 weeks) has just been diagnosed with a floppy windpipe. He struggles to breathe a lot and is very noisy... he seems to be thriving, putting on weight etc, but does get quite distressed by it sometimes.

Anyone got any experience of this? did you find anything that helped ease it? did it go away by itself or did you end up having to have an operation?
any advice appreciated!

[hoxtonchick]

a friend of mine is going to great ormond street tomorrow with her 5 week old daughter for exactly this reason. i'll let you know what they say. i know my friend has been extremely worried, i hope you're doing ok.

[starlover]

ooh, i'll be interested to hear what they say.
They've said they won't operate or anything unless it is stopping him breathe (ie if he is turning blue), or if he isn't feeding properly because of it.
WE just have to wait it out and hope it sorts itself out.

[taramac]

A friends daughter had this - she is now 5 and no long term damage and she no longer has it. I know she spent some time in the special unit when she was born but they just got through it - was v scary for them for a while I think. She does feel the cold a lot and can get quite bad chesty coughs - but no more so than other kids I think.

[BeachedWhale]

Hi Starlover
My dd had this and I was so worried about all the noises she was making especially at night. I used to be up and down all night checking up on her as she sounded like she was choking.
She was also very sicky and got quite distressed when laid flat. I propped the end of her cot up on a couple of books as sleeping on a bit of a slope seemed to help.
She is now 11 weeks and she has grown out of it. I still can't sleep at night as she is so quiet now
So long as your DS is well and thriving I think it's usually a case of just waiting until the muscles etc in the throat mature. It is worrying though isn't it when it sounds so horrendous.

[jabberwocky]

Ds was never officially diagnosed with this, but we assumed that is what he had due to the noise he made at night. It never seemed to cause him any difficulty breathing and did go away. Can't remember exactly when though.

[starlover]

thanks for the replies. It is very worrying, and he does have brief periods when he tries to breathe in and can't and then after a few seconds there is this big gulp and wheeze and he gets it in!
Very scary, but as I say, he is thriving.
I am glad that he has been diagnosed after seeing 3 doctors who all fobbed me off with "it's wind, give him infacol"... but feel disappointed that there is nothing I can do for him!
He also has his crib propped up, and he lies on his side which seems to help a bit.
They said they wouldn't really consider doing anything until he was a year old... can't imagine having to live with this for that long!

[efmach]

My middle child had this when he was born and was in SCBU for five days. Very noisy feeder and sleeper. I believe it is called trachaeo-malacia. In his case his windpipe improved by 12 weeks old.
The severity of this problem can vary from baby to baby. Sometimes it can go on for a lot longer and in a few cases, medical intervention is required.