Trachea Malacia?

[Ellyn]

My daughter was diagnosed with trachea malacia when she was 3 weeks old. They said she'd out grow it by 6-12 months. (She also was thought to have a diaphragmatic hernia, but after surgery, it was found that it was an eventration - one side sat higher than the other) Anyways, her trachea collapses when she breathes and she breathes quite loud - especially when she's excited. Now that she's pushing 6 months old, she is getting quieter all the time. For those of you that had a DC with malacia, did you have them rechecked at 6mo? Honestly, she's been through so much - jaundice/billi lights, testing for cystic fibrosis, hospitalization a few times for her malacia and diaphragm, major surgery on her diaphragm, etc...I don't know if I want to put her through more testing (a scope through her nose of her trachea). If you did have this testing done of DC (DD had it done at 3 weeks and 2 mo. old), did they put DC under of give him/her any sort of meds? We went to one sort of major hospital in our state for it and they didn't give anything for meds...they just did it. Then we went to Children's hospitals in St. Paul, MN and they were surprised when we told them she had a scope and was never given anesthesia. Should I have her rechecked? I certainly don't want to be neglectful, but at the same time I hate to put her through an unnecessary test. Should I request some sort of medication/anesthesia?

[Hula1974]

I'm sorry for what you are going through.
I am not familiar with that diagnosis, however, DS was scoped at 3 days old and again at 1 month old. Nope, no anethesia. He cried like you wouldn't believe but they were able to get the image they needed.
Good luck.

[mommydearest]

I would have a frank discussion with your ped about the necessity of the test and your reservations. If you trust your ped, and voice your concerns, you probably can come to a decision you both feel good about.

Good luck!

[shouldaeloped]

ellyn,

my BFF has a daughter with trachea malacia and although I don't konw the specifics of when and how she was tested, I do know she was retested. I'll talk to her tomorrow and ask the question for you.

if there is anything I have learned from her thought, it's to trust your instinct. if you are concerned and your gut is telling you to be cautious, then be cautious. seek a second opinion and a third and a fourth until you are content. you as her mother know best.

good luck to you and your DD and I'll post again tomorrow after I talk to my friend.

[goldfish]

My DD was also diagnosed with trachea malacia as an infant. I remember how scary it was to hear her breathe that loud! IIRC, (she's almost 4 and a half now) she had the scope done at her initial diagnosis by the ENT and when she was rechecked she did not have the scope. I took her back to be rechecked just as a formality, since I could tell that the condition had improved because her breathing became more normal. But she wasn't rechecked at 6 months, I think it was closer to 1 year, since our dr. said taht she would grow out of it by age 2. She did not have any anesthesia when she had the scope, I'm sure it was really uncomfortable but I remember the ENT saying that it wasn't painful. Anyway, to answer your question...it sounds like she's had a number of health problems, so perhaps she should be rechecked just to rule out one more condition? Actually, I just reread your post and it sounds like she was hospitalized for the malacia...I would get her rechecked if it was that serious. Best of luck to you.

[Ellyn]

Thanks for the replies. Maybe we'll have her rechecked by the ENT, but only get the scope if the ENT deems is necessary. She was hospitalized for the malacia because no one knew what was causing the loud breathing. When she was born they called her the "morning dove" in the nursery because she was noisy. After having her home, she got "gruntier" - that probably only makes sense to someone whos been around a trachea malacia baby ;) - and I got more worried. At her 2 week checkup I mentioned it again...something wasn't right. And the dr listened to her and said her lungs sound clear - she's just a noisy baby. The next day we took her for a second opinion, and that ped. sent us directly to their main hospital - over 2 hours away. The doctors at that hospital kept her for observation because they were worried and didn't know what the sound was either. The ENT finally looked at her and knew what it was right away...and says he sees it all the time and most babies outgrow it at 6-12 mo. Anyone else have experience with malacia? How did you discover it - did the drs know what it was right away?

[Ellyn]

Bumping this up...seems like forever since I posted this. DD got pretty much completely better...the ENT never scoped her after hearing her improvements. But now I have a question if anyone has a DC with malacia...DD is now over 1.5yo. It seems to be coming back. Is that possible? Anyone have any experience with this? I think we may have to take her to Children's again to have it checked. :(