Printable View
My baby has been diagnosed with a floppy windpipe otherwise known as Trachiamalacia. When he breathes it sounds like he is choking and struggling for air. The specialist said he will grow out of it by 6 to 18 months.
Has anyone else been through this? Apparently 1 in every 2000 babies gets it, so it would be great to hear from others who have been or are in my situation.
Hi Renson, I dont know if this is the same thing but my step nephew was diagnosed with a floppy voicebox. When he inhaled it made a rattling ( maybe choking kind of noise although once you knew what it was, it wasnt disturbing)
Mind you, this would be about 20yrs ago now. I was only 13 when he was born.
He did grow out of by the time he was about 2. It never bothered him, infact it used to bother us when he didnt rattle. We got so used to it, that if he missed a couple of "rattles" while sleeping we would wake up and go check if he was still breathing LOL.
Was kind of like a built in baby monitor :lol:
Oh I just remembered, it did continue until he was about 4 but only when he got upset or really tired and it would come back for a tiny bit.
Unfortunatly my step bro and his wife split up 15 yrs ago and I havent seen my nephew since he was 5.
But as far as I know, it dissapeared completly. HTH, Shell
hi there, my daughter has this, although slightly different. she has bronchea trachea laringo malysa (please excuse my spelling!) which basically means the whole way up, not just some of the windpipe. hers was very bad and we ended up in PICU when she was 5 months old, but they seem to think this was caused by having so much trauma to her throat (whole different post, she had had 6 intubations by that stage, and open heart surgery the week before her airway collapsed!). she came very close to needing a trachy for a while, but luckily we avoided it by some time in PICU and a CPAP mask. she is 20 months old now, and it is soooo much better. she is on night oxygen still, but again all her other health issues have compromised her airways along the way, and it is a very slow recovery process. they initally said to us that it would resolve itself as she put on weight, she weighed 4.2kgs at 7 months old, and it has. she is only really noisy if she's really tired or has been playing a lot or had physio. she had a camera down there last month and they said she has more space in there than they have ever seen with her. but a recent sleep study showed her windpipe does still collapse on itself when she is in a deep deep sleep hence the need for oxygen still, but they are amazed at how good she has come. the drs have told me she is pretty much worst case senario for BTL malaysa, and just about the only case as bad as hers that hasn't required a trachy, so i imagine your bubba should be just fine and grow out of it. I am here if you have any more questions. HTH, Louise:D
Hi everyone, :D
I just wanted to post an update to share how we are now going.
Firstly thank you for sharing your stories. For a while there my husband and I were feeling very alone, scared and on edge with the thought that our baby boy may not wake up in the mornings from this condition. Your stories made us feel supported. Thank you:loveshower::loveshower:
Our boy is now 13 months old and absolutely thriving!:dance: We were initially told that his floppy windpipe may delay speech development, which he has proven wrong. He now says 30 words or more (mostly parrotting) but definately associates words with the correct object (button, car, nanna, bath, pool etc). He is walking fast and the only time we hear his floppy windpipe is when he is puffed and there is a slight rattling noise.
I was watching some videos of our bubba when he was 2 months old the other day and hearing his struggle to breathe bought back so many emotions, however really made me appreciate and be thankful for how far he has come.:pray:
I wish everyone going through a similar condition all of my love and support. There is hope and you are not alone. I'm happy to chat with anyone who needs some advice or support xxxxx