Tracheomalacia??

Hi Sara,

I'm not familiar with it, but I can imagine you were startled.
From what I read, it can be corrected?
Has your little boy already had surgery or is that going to happen soon?

Anyway, lots of luck and strength, and I hope everything will go well.

Greetings, Dani

Hi Dani,

Thanks for your reply. To be honest, I wasn't aware of it myself and had no idea what it was. I'd already been to the GP because he has quite a loud breathing sound—it sounds like a little piglet—but they didn't take it very seriously, thinking it might just be mucus. This week we had to go to the child health clinic (CB), and they were quite alarmed and told me I really needed to see a doctor. I did ask for a referral letter. I'd really like to know how far along it is now and what needs to happen next, because the GP isn't really helping me understand.

Thanks for your message!

Best, Sara

@Sara,

You must have been so startled.
By chance, the topic was discussed on doctors' shows on Net5,
but otherwise, I had never heard of it either.
Wishing you all the strength with everything.
Let us know how your little boy is doing.

Greetings, Ju

I've never heard of it myself.
Wishing you lots of strength.
Greetings, Maya

Hi Sara,
While looking for other moms with this experience, I came across your post.
My son has this too.
The first time I heard that suffocating sound, I was terrified. And even after 4 months, I still can’t fully relax.
He was hospitalized, and the pediatrician told me he’ll just “grow out of it.”
Meanwhile, I’m glued to my baby monitor day and night, and whenever there’s even a brief silence, I rush over again. It never gets easier!
Thankfully, he’s never gotten stuck like that—sometimes he struggles for air for a moment, but he usually recovers on his own pretty quickly.
But yeah, you can imagine I’m always on edge.
How’s your son doing now? Is he doing better?

Best,
Tamara

Hi Tamara,

Our little boy is almost 2.5 now, and he has indeed really grown out of it. I don't notice or hear anything from it anymore. Honestly, I didn't expect that (given the noise it sometimes made), but it's truly so happy I do recognize being glued to the baby monitor. I hope I can ease your worries a bit, and I hope your little boy grows out of it soon too.

Lots of strength. I know how much pain and uncertainty the worries can cause you. It will really be okay.

Love,

Hi Sara,
I'm familiar with tracheomalacia, I actually have it myself. I used to get very sick a lot during my childhood and was hospitalized many times due to the accompanying pneumonias. It took a long time for this to be diagnosed in my case (I was 16). Once it was finally known, I did a lot of physiotherapy focused on breathing and clearing mucus. I also learned to cope with the "collapsing of the lungs". I can say that despite having a severe form, my life has improved enormously thanks to the diagnosis! In my case, the malacia is not only in the windpipe but also in the branches and entrances to the lungs. My parents always encouraged me to do sports, which increased my lung capacity and now I can function normally. I do get short of breath sometimes, especially during the hay fever season or when I have a cold, and I'll always have to be vigilant about pneumonias, but it's perfectly manageable to live with!
The golden tip is definitely sports! If I do less sports, I notice my lungs also deteriorate, as long as I keep doing this, there's no problem. The only time people notice something is when I have a cold, then I sound like a seal and have coughing fits that would scare an average person to death, but I've learned to cope with that too.
If you have questions or concerns, feel free to ask anytime!

Hi there,

I don't know if anyone still reads this... But I still wanted to chime in!
Our daughter is eleven months old, and yesterday she had a bronchoscopy that FINALLY gave the reason for the constant rattling, coughing, wheezing, and whistling: tracheomalacia!
In her case, the right branch of the windpipe is weakened, causing it to collapse when she breathes in. She mainly has it when she's a bit sick, or when she gets excited about something, or when she's playing wildly.
The mucus in the lungs can't get out as easily due to this laxity, hence the wheezing sound... Many GPs will never encounter this in their career, or at least won't go further down this path to investigate it. It's often dismissed as a form of reflux, namely the atypical type where acid flows back into the airways. We thought this for months! Fortunately, we were referred to the pediatric department in Genk, which specializes in lungs.
Now she has to do exercises with a PEP mask, so she has to exhale against resistance, which helps keep the airway open. Hopefully, this brings improvement, and then I comfort myself with the thought that she'll probably grow out of it!

Good luck to everyone dealing with this syndrome!

Hi anonymous, could you please tell me which doctor in Genk? I strongly suspect that our little one has this too. She squeaks when she lies down and especially when drinking... so scared!
Thanks in advance.

Hi! Our daughter had it too. After months of reflux, apnea episodes, and sounds like she was choking, I went to the pediatrician with this suspicion, and yes, the doctor confirmed it. When she started on solid food, it was also noticeable that she often coughed while eating. We also always had the baby monitor on, even at night next to our bed. And every time she made unpleasant sounds, we'd check and shake her. She's almost 2 now and we still hear weird noises sometimes when she's really deeply asleep. She's still often quickly short of breath and has been sick off and on for months, which makes me wonder if it's related. But our GP just says it's another virus, she needs to build up her immunity. That could be true, but I can also imagine that this might give her a higher chance of infections. All in all, it didn't seem to affect her much, apart from the reflux (which was really severe). It all sounded pretty scary, but she really bounced back!