My 4 month old diagnosed with laryngeal or trachea malacia - anyone got any experience?

[Roca]

Hi,

My 3rd baby is 4 months old and since birth has 'grunted' a lot and made a lot of noise when breathing - after leaving it a while I finally thought this is just not right and saw a DR today who says it is laryngeal or trachea malacia. She feeds fine (breast) and it does not seem to distress her at all - just noisy on and off and goes when she is in deep sleep.

I want to start her weaning soon but am a little worried that it may go down the wrong hole sometimes so wanted to hear any other stories on this / how long it took before your child 'grew out of it' etc and if anyone had any problems or scary moments with childs breathing (the thought of her turning blue petrifies me, even though I am chilled out about it as such)

Am now waiting to see if she will be referred to EN&T hospital. As I said, she is on target for her weight, feeds well and is a contented baby etc I just want to know what to expect now.

Many thanks in advance

Hi my Ds3 had larygomalasia with a biphasic stridor (grunting when he breathed in and out). Feeding and weaning was fine physically so i dont think you need worry about it "going down the wrong tube". Most babies tend to grow out of it as their system becomes more mature. My wee guy required surgery to correct his though, but that was because he had other problems associated with his laryngomalasia such as severe reflux and weight loss.Your wee one sounds really healthy so i dont expect they would intervene unless there was really a good reason too.

The stridor and condition itself didnt cause him any breathing difficulties. So i hope this reassures you in some way too

thanks upagumtree - how old was he when he had his surgery and how did they do the diagnosis first? It sounds like I am lucky that her weight and feeding are good - no sign of reflux so far.

also - is he totally fine now - i.e.would you have even known he had it?

Hi Roca. Alex was 5 months old when he had his surgery.

When he was 5days old i noticed that he had a stridor/grunting with his breathing. He was also vomitting continuously every day.

I took him to see my GP who was very understanding, called the hospital and arranged for me to go up with him there and then. He did have a couple of dusky/blue episodes within the first few weeks of being born, but nothing since. His circulation never seemed great though and he always looked mottled.

His vomitting continued throughout the following months, so we were refered to ENT who performed a fibroscope, where they pass a fibre optic tube with a small camera down into the larynx. With the camera they can visualise the structures of the throat and detect any abnormalities if there are any.

His laryngomalasia was diagnosed with the scope although we were expecting that to be the case so it was no real surprise by then.

He was monitored for a further couple of months but his weight had now significantly tailed off. So the decision was made at that point to operate. It is a simple procedure but done under a general anaestheic and requiring an overnight stay in hospital. It took about 6 weeks post surgery for the stridor to dissapear completely. We only ever hear it now if he has a cold. (laryngomalasia babies are very prone to colds and chest infections).

He has other medical concerns but thankfuly laryngomalasia is not one of them now. He is babbling and talking really well, so don't worry about speech development or anything, and like i said before, Alex's malasia was severe. Most babies with it just outgrow it on their own without any intervention at all.
So in reply to your last question...no you wouldn't know he had had it.

Sorry for taking so long to get back to you but i hope i have put your mind at ease. If you have any other questions i'd be happy to try and answer them for you

that's great - thanks. That must have been hard for you to go through, poor mite. That has answered loads for me - primarily that she seems fine otherwise so am sure they will leave her to outgrow it without too much intervention.

My dd2 has laryngomalacia, it was diagnosed when she was 4 weeks old and in hospital with RSV bronchiolitis. In itself, it never caused any problems - though she did have reflux, and was on meds from 8 weeks till about 18 months for it.

In conjunction with RSV, and being 4 weeks old, it did cause problems - kids with larygnomalacia are more likely to be hospitalized when they have upper airway infections, simply because their airways can be narrower. Not necessarily a problem, but can add to other ones iyswim. She also had big tonsils and adenoids, by the time she was 2, and the floppy larynx didn't exactly help - though again, it really wasn't the main problem. She's now had tonsils and adenoids out, and the ENT consultant did minor surgery cutting two tiny bands of cartilage either side of her windpipe to allow her larynx to expand more easily - said he 'might as well, since they were in there already', and I agreed.

She still gets the classic 'squeak' when she is asleep and has a cold, but otherwise its irrelevent now and she's a blooming 2.3

Re weaning, we had no problems at all once we let her choose her own foods and feed herself: she hated purees from the start, and I suspect it was harder for her to swallow than 'bits' either because of her tonsils, or her larynx, or both.

Its great that your LO hasn't reflux symptoms thus far - apparently, 80% of kids with laryngomalacia do.

dd has never turned blue, or choked on anything, though we did worry about her breathing whenever she had a heavy cold or chesty cough: the RSV episode taught us to be that bit more vigilant with her than with dd1.

There was a flurry of laryngo/tracheomalacia threads a few weeks ago - someone started one for info and support for all concerned with it? I wish I could do links...but if you run a search, in the Childrens Health section, I'm sure you'll find it

Just re-read my post, and it makes it sound as though dd's larynomalacia was more of a problem than it was - it wasn't, apart from when she had RSV. And she was left to grow out of it with no intervention, till the tonsil situation meant we 'might as well' etc!

Thank you so much Elibean - it's great hearing others stories about this. I have always visited friends even when they had kids with a cold etc but feel now I may be a bit more cautious because od DD2's condition, would you say it's silly to do that or probably sensible?

I wouldn't worry about colds too much, dd was only 4 weeks old when she had RSV - and RSV is very different to a normal cold - she had no problems with colds after that!

I would avoid kids with croup and/or bronchiolitis, or colds that sound very croupy/coughy/hoarse-voiced....but really, don't worry too much. At 4 months she's already got a much bigger airway than at 4 weeks.

Enjoy weaning!

thanks Elibean - oopsy, did you see my other post - feel bad now!

No, did'nt see it?? Am guessing: if you kept away from someone with cold, never mind, you'll avoid some sleepless nights

Our 4 month old baby boy is getting continually worse at night. He cries and screams to be held. We are at our wits end. Because he has layngomalacia we are concerned to let him cry it out. What should we do?

Poor you, I know how exhausting that is.

Is he being treated for reflux? My dd was, automatically, once her laryngomalacia was diagnosed - because more than 80% of babies with it also have silent reflux. It can account for an awful lot of screaming at night (when lying down, basically) so if your ds isn't on reflux meds, I would ask for some asap.

If he is on reflux meds, any way of knowing whats upsetting him at night? Could he be an early teether? Is he just unsettled, or colicky? What comforts him when you pick him up?

I didn't do 'cry it out' with either of my dds, with or without the laryngo, tbh, so not sure how the larygno impacts...but I do know dd2 used to choke a bit and be sick if she cried for too long, at that age, so understand your concerns. Personally, I'd say at 4 months they are v v young and I would always pick them up anyway...exhausting as it is....

dd also slept on her side, wedged with small rolled up towel or tiny cushion, which makes breathing easier with laryngo. And we raised the head of the cot by putting books under the top end feet, for the reflux.

HTH a bit, let us know how he's doing

How's it going, NF? Sorry I missed your post on this thread, think we 'spoke' on the other one at that time....hope the feeding is going better!

hello
my 6 months anushka also facing laryngo malesia
it was dignosed on her 4 th day.dr told it need not to operate.still some sounds wen she breaths.she is still underweight.did ne one experienced it. i m worried about her weight n sound...

Sakhu, if you are worried about her weight, do talk to your GP and/or Health Visitor. Both were very helpful to me (of course, it does depend on the individual!) with dd2. Does your baby see an ENT consultant? My daughter still makes a little sound at night, when asleep, even now at a very healthy and robust 3.5 years old. I wouldn't worry about the noise, but do keep an eye on the weight: sometimes, babies with laryngomalacia can have a harder time moving on to solid food - and I see your baby is 6 months old, is she weaned?

We actually found dd did better with baby led weaning (pasta, well cooked vegetables and fruit, that she could pick up in her hand and eat herself) rather than spoon-fed purees, which she refused. When we let her be in charge of what she ate, she put on weight - until then she was dropping down the charts, and the HV was quite worried. We were told to give her high fat foods, whatever she liked (I seem to remember a phase of chocolate baby biscotti!!) best, etc.

Later on, we found dd also had large tonsils and couldn't swallow very well - so she did have surgery in the end, aged 2.5, but that was not strictly to do with the laryngomalacia. Wishing you and your dd well, xxx

Hi all,

My son (13 months) has some tracheamalacia - he was born with his trachea and oesephogus compressed by his aorta - rare birth defect!

We didn't know until he was 4 months when he caught his first ever cold and ended up in intensive care on a ventilator. They did an operation to correct it but because the trachea had been squashed it was left a bit floppy. He is very well now but hasn't caught a cold since due to my extreme germ-paranoia and cotton-wool wrapping.... He's a long awaited ivf baby and I was always a bit anxious before all this, so bit of a recipe for disaster. He should be much better than before when he does catch something - after all, he's bigger, and the defect's been corrected. Just not in a hurry to test it. But getting harder with a toddler..

Anyway, sorry about long story - just wanted to say hello to you all.

My son is now 6 years old the condition has not gone away as they said it would he has been diagnosed with asthma and is very prone to getting pneumonia. He has had several rigid broncosopy's (this is probably spelled wrong) and He had bad reflux. He had a nissin to help with the reflux. But because of where his problem is he has not had surgery to correct the issue. We were told he would grow out of the condition by the age of two. The best thing that I have found is to listen to all the technical terms the doctors use. Find out what everything means and be well informed. You need a good Pediatric Pulmonologist that is willing to go to bat for you, if the condition persists. It can be really expensive, if you end up going to the hospital a lot. With a good doctor you can get all the machines you need at home and be able to learn how to do everything to help her on your own,

My son is now 6 years old the condition has not gone away as they said it would he has been diagnosed with asthma and is very prone to getting pneumonia. He has had several rigid broncosopy's (this is probably spelled wrong) and He had bad reflux. He had a nissin to help with the reflux. But because of where his problem is he has not had surgery to correct the issue. We were told he would grow out of the condition by the age of two. The best thing that I have found is to listen to all the technical terms the doctors use. Find out what everything means and be well informed. You need a good Pediatric Pulmonologist that is willing to go to bat for you, if the condition persists. It can be really expensive, if you end up going to the hospital a lot. With a good doctor you can get all the machines you need at home and be able to learn how to do everything to help her on your own. Good luck with everything and if you have any questions please don't hesitate to ask.