Laryngomalasia

[Owly12]

We have just been informed that my 7 week old son as something called laryngomalasia (soft windpipe) which has been causing very noisy breathing, snoring, snorting at night. It’s very scary to listen to, and it makes me check him constantly through the night, my husband keeps telling me I need to try to ignore it, but my body / brain won’t let me. Has anyone else experienced this, and do you have any tips on how to cope with it?

We're moving your thread to our Children's Health topic and giving it a bump for you, OP. Hopefully some Mumsnetters will be along soon with some advice and support.

Yes! My baby was diagnosed with this at 8 days. I have videos of those early days that still terrify me to watch. We were reassured time and time again that the noise is worse than the actual effect on breathing. Our doctor did arrange a sleep study overnight in hospital and this proved all was ok as her sats remained good all night. After this I relaxed a lot.

We have had a few appointments with ENT specialists at St George's who used a camera up her nose / down her throat to check severity but luckily she didn't need surgery. We did have big feeding issues as she got out of breath sns tired feeding very quickly and this had an impact on her weight gain. She is 10 months now and very small (16lbs) and has to have special prescribed high calorie formula.

I did a lot of research at the beginning. If you have any questions l would be very happy to try answer them.

I did end up getting an Angelcare breathing sensor for night time sleep and this helped my anxiety a lot. The ENT specialist suggested it. I also kept her in my room for a lot longer than most (9 months)

This is very helpful thank you. We haven’t been referred for any follow up or anything as it was the paediatrician at A&E who diagnosed it, was it your GP who referred you to ENT? Was it your FP or ENT who organised the sleep study for you? My wee one doesn’t seem to have any issues with feeding 🤞just the very noisy (frightening) breathing.

Could you get an owlet sock thing that keeps track on them breathing and will alert you if anything happens?

Well there were added issues with my baby because she was 6 weeks early so very small anyway. Plus she would have white long pauses in her breathing when she was on her back. Due to her being prem she was under the care of a doc at the hospital who referred her to ENT and and arranged the sleep study. I think pretty much the only reason floppy larynx ever needs further treatment is if it effects feeding so that's really good news that it doesn't.

When they get stronger and bigger they grow our of it. We still hear hers but it's much much more subtle now.

Loads and loads of tummy time will strengthen in more quickly too

Ahh, yes ours was 5 weeks early too. I wonder if it’s more common in premi babies. I’m speaking with our own GP next week so will discuss referral to ENT to see if it’s needed.