Well, I thought maybe it was time for a little update about Baby Bee’s floppy larynx. You might remember that he was diagnosed with moderate laryngomalacia (a birth defect of the airway) when he was two weeks old. I recently heard that a mom in our area had a baby who had laryngomalacia and tracheomalacia, and I hearing that news took me right back to the first days after Baby Bee’s diagnosis when I was so nervous, worried and exhausted. I so wish that I had known someone who had been through this before me.
I know when he was first diagnosed with laryngomalacia, and the doctors said things like it will get worse before it gets better, it should resolve by 18-24 months, his airway will firm up as he gets older, etc. At that time I really could not wrap my mind around what a floppy larynx would be like in an older baby. I only knew what it was like in a teeny newborn, and that was loud, squawking, high pitched and completely unsettling. Every time Baby Bee breathed in, his larynx flopped over his airway, and created some kind of sound. I can’t count the number of times that I wished I had a mom friend that had a baby with LM, who I could call or text and who would say, well, this is what it will be like next month, at six months, at one year.
Honestly, in those first three months, I was very anxious. There were many days when Baby Bee was so loud that I would call Darryl at work and say, Is this normal? Should I take him in? His chest is retracting, but he seems happy, so what do I do? It was nerve wracking, and I know I grew a few more gray hairs. His breathing was so noisy at times that we would have to talk loudly just to hear each other over the racket. Thankfully we have a wonderful pulmonologist that I felt comfortable calling anytime at all if I was concerned.
As you know, I did everything in my power to stop any sort of reflux from happening, because when he would spit up, it did make his breathing sound a lot worse. The radical diet changes I made were totally worth it to me, and of course as he grew, spitting up basically stopped anyway.
I made every effort to avoid germs and sick people during the winter seasons. This year it seemed that everyone in Michigan had the plague, so we basically did not take Baby Bee out in public. Does that seem extreme? Maybe to some, but I was not willing to take any chances. The flu and respiratory infections that were going around here were severe and took several weeks to get over. I was comfortable dealing with some isolation if it would keep Baby Bee from getting a nasty cough and compromising his breathing.
When Baby Bee was around five or six months, things started to improve somewhat. The super loud noises started to tone down as his airway widened. He would still get loud, but not as often, and not so loud.
As he grew, and was sitting up on his own, and then pulling up to standing, that seemed to help quiet down his breathing as well. He started to crawl, and then was walking by eleven months. By the time he turned one, I would only rarely hear his stridor. When he was sleeping, he would still have a bit of a low pitched stridor that sounded like hehh-hehh, hehh-hehh (combination growl, snore and laugh). This was worse when he was teething heavily. If he was very drooly during the day, he would also have that low pitched stridor as well.
Last night, he was sleeping, and his breathing was louder again…I think due to some excess saliva pooling back in his throat. I would say that 60% of the time now he breathes silently when he sleeps. I really do not ever hear his stridor during the day unless he is very congested. The fact that I can’t hear his breathing is amazing to me. Fifteen months ago it was very hard to see ahead to this day. His floppy larynx still is not totally resolved, and we will have to wait and see how long that will take. I am so thankful that he is growing and thriving and doing so well. Holding my tiny guy in the hospital room after his bronchoscopy, I didn’t know what the days ahead would be like. I prayed and prayed and prayed that his breathing would be easy, that he would grow and that God would protect him and keep him alive and well. God is so faithful.
So if your baby has recently been diagnosed with laryngomalacia, I would say this to you: I know it is so scary right now. Having a new baby is overwhelming, and hearing that his airway is compromised is so frightening that it is hard to even comprehend. Find out everything you can about your child’s condition, and keep in close contact with the doctors that are treating your child. My experience was with moderate laryngomalacia, so not every case is the same, but it will get better. As your child grows and gets bigger, the noisiness will improve and those early days will become a distant memory.
Try not to let your worry steal your enjoyment of the early days with your baby. Enjoy those first snuggles, smiles and the times when he is sleeping in your arms, even though he may be breathing noisily. It goes so fast, and soon you will be chasing a busy little toddler around the house and wondering where on earth time has gone. :)
Helen
Hello Kelly,
This has really been helpful, and the others are not!!! Our 23 month old Grandson has this condition and now has a cold. We called his Doctor, but they are too busy to see him and we are looking for any information to see if he should go to ER or Urgent Care. He has a sore throat and has difficulty swallowing, but no fever. Not asking for medical advice, but I wish the medical sites would provide more information on what to do if they have this condition and they do get a cold virus. Thank you for letting me vent.
Kelly Roenicke
I know how hard it is! If you aren’t satisfied with his medical team, I encourage you to find a new one. Navigating this was made easier for us as we had a wonderful doctor who was very available to us. I’m sorry you are going through this. It will get better as the airway gets bigger as the child grows.
Diana
Thank you for sharing your experience. My daughter Alison has also been diagnosed with laryngomalacia 3 days after birth, but I wasn’t aware how loud and scary those stridor noises would be getting. Now she is 3 months old it seems to lessen a little, she has moments of quiet breathing (when I run into her room to check if she is still alive!) so that seems like progress. Her chest and her larynx spot still retract like your sons used to, and that is scary looking. She seems to just get on with it (I guess she doesn’t know any different) but we are making very slooooow progress with the weight gain. Reflux is an issue that is getting better – she used to spit up loads constantly- but her pedeatrician never put her on meds. She gains weight slowly at about 100 grams a week instead of the 140 healthy babies gain as a minimum. good thing she was born at 4kgs she had a little buffer fat reserve. I worry constantly when she has a slow weight gain week or a day where she doesn’t drink well. Reading about your experience gave me some hope, thank you 🙏.
I do have a question for you… if I may ask. – she has never had a cold. I have kept my 4-year old son out of kindergarten because of COVID-19. Kindergarten has opened up and is operating normally again, all his friends are going but I am still keeping him here not just because of Covid but also because the thought of bringing home any sort of cold or chest infection to Alison terrifies me. But keeping my son locked Up with us for this long (since February – I was very careful during pregnancy as well) is not healthy either.
What would you do? Let your older son get on with a relatively normal life and protect his sanity or be extra careful not to worsen the babies condition with some big he will bring home? If you have an opinion on this I would value it very much 💕.
Thank you x
Diana
Kelly Roenicke
Hi Diana, I know how hard it is to navigate LM in a baby when you have an older child at home. I think you have to decide what is right for you. It’s so hard because everything you said is true – you don’t want to sacrifice his sanity, but COVID is very serious, and your daughter has an issue with her airway. Is there a way to help your son pursue more “normal” activities without exposing him to lots of kids? Could you spend more time in outdoor spaces that might be safer? Like parks, playgrounds, zoos? It’s really hard, I know! It was tough when I was dealing with it, and that wasn’t during a pandemic. It will get easier though, and as she grows, things should only improve! I will keep you guys in my prayers!
Jish
Hi Diana,
When I read your reply I felt like it’s my story. My daughter was born in Nov 2020. She had her Supraglotoplasty in 20 days of life. Weight gain, reflux is an issue for Evie.
Just wanted to check if your bub is on only special formula to prevent reflux? My daughter is on Meds for reflux.
Just trying to find out ways to help my daughter!
Thank you so much! 😊
tasneem
Hi, my baby is 21 days old and has been diagnosed with LM. I am very much worried and seeing this post gives me strength and some positive vibes. She has moderate symptoms like noisy breathing. She is able to feed well. Will the symptoms get worse over next months and does LM cause any speech delay later?
Sowmya Girish
Hello madam,
I am a mother of 4 months baby, he has nosiy breathing occassionally, he makes snoring sound somtimes during sleep. He makes loud sound after feeding. Pediartic told he has bit of larygomalacia component. He takes pauses in breathing during sleep, pediatric told , it is called as periodic breathing , not to worry.
Pediatric has told to meet ENT, since lockdown is there due to corona, Wil meet next month. I have taken few videos , can you tell me, how is my baby condition ..please I beg u.
Due to lockdown I can’t meet doctors here .
Please madam.
Jemma
Hi did you go to ENT in the end? My baby has it too 14 weeks now.
I am wondering how weaning went? Did you hold off because of LM?
Alisha H
I’m so excited to find this blog!! Like you said I don’t know anyone who has had to deal with this with their infant so I have no outlet or anyone to talk to who can actually relate to what I’m dealing with and what my baby is coping with. Thank you for your transparency!!! I hope that you still check this as it does bring me comfort knowing that there is someone who I can know ask questions and get viewpoint outside of our doctors!! 😀
Kelly Roenicke
I know how hard it is to hear your baby breathing loudly and making all kinds of noises! It does get better as they get bigger. Hang in there – I am happy to answer questions!
Janine
It’s the middle of the night and my husband and I are up feeding our twin newborn boys, both of who have Laryngomalacia. I google it every night, trying to figure out what’s normal, will they be okay, did I do something to cause it, will I ever be able to take them out of the house .. Your post is the first thing I’ve read that gives me comfort and helps me better understand our road ahead. Thank you so much.
Kelly Roenicke
I’m so sorry you are going through this! I know how worrisome it is, especially at the beginning. It will get better – as your boys grow, the sound will get worse at first, but then it will improve. Hang in there! You are doing an awesome job!
Milly
A beautiful post, thank you. I say this at 3am as I have my 6 week old baby boy sleeping propped up on my chest as he has larynglmalacia and I don’t want to let him sleep flat!
Cindi
Thanks so much for this post! I am in MI too and my newborn (now 2 months) was diagnosed (informally) with LM. He definitely has stridor at varying levels of intensity throughout the day. My ped basically said nothing to worry about as he is gaining weight well so far and feeding well (though we take a decent # of breaks during nursing as he stops breathing on occasion and needs to catch his breath.) What most haunts me is whether I need to be taking any extra precautions (you mentioned being vigilant about keeping yours away from sick people, etc., which of course I keep mine away as best I can too), considering my ped on multiple occasions showed little concern. I just want to make sure I am advocating for my baby if it is necesssary (i.e. be more persistent with the ped or just take their word for it that he is ok and no extra precautions needed since he is healthy.) Appreciate any feedback as I have yet to meet another parent of a child with LM. Thanks!
rosies mum
Hi Kelly. I was wondering how you dealt with other people’s reactions to hearing your little one. I noticed my babies breathing strange from 3 says and at 6 days I done my own research and diagnosed her myself and pushed docs to listen to me. She has had 2 scopes and has severe reflux so she’s on ranitidine. I have only had 2 social outings of an hr and the rest is hospital ent and docs appointments. I can’t deal with how people stare and gawp. My friend said she was scared by the noises and my brother made a comment of how loud she is and it just devestates me. I have been diagnosed with severe anxiety and depression over all this. I hate how doctors say its nothing to worry about but if she gets a cold you might have to bring her to a and e. I am a constant nervous wreck. It’s summer here in England and she’s 9 weeks old. I want to take her out but my anxiety takes over. I dread it if she cried as this makes it worse. I feed her every 3 he’s but it takes me hr to be half to wind her. The thought of feeding her in public terrifies me because of how noisy she is. Did you have the same anxieties. What did you say to people? She coughs and choked too and constantly sounds like she has a chest infection even though she hasn’t. Please help me
Kelly
Sorry I am so late with this reply! I know how hard it is. I remember my son sounding like a honking goose – it was SO loud! It will definitely get better as she grows and her airway widens. After awhile it will just sound like she has a cold, and people won’t stare. I know it’s tough now, believe me. I just explained (if people were really staring) that he had an airway issue, and he wasn’t sick. But you don’t have to explain if you don’t want to! You are doing a great job – just love your baby, snuggle her, keep your eyes and ears open, and talk to your doctor about any concerns you have. There is a Facebook group for this as well, I think it’s called Coping with Laryngomalacia. Best wishes to you, I will pray for your little one!
Danielle miller
Thank you so much for this post. I am currently going through this and it has been so difficult. I have tears in my eyes just writing this. My daughter is 15 months and it is still such a struggle. She has been scoped awake, and received the diagnosis, but we are scheduled for a broncoscopy to check for additional issues. She recently was sick and began choking on foods. Her drinks are all thickened as well. It’s A Very Draining Situation, And Your Post Was So Uplifting. Thank you. God bless
Amanda
Hi Danielle, I am actually ahesterman above, and left that comment when my daughter was 2 months old…I so know how you feel! She will be 3 in a couple weeks and I have to say that I don’t even think about this anymore 99.9% of the time. So please be comforted that it gets SO much better!!! Kelly was so encouraging to me when we were in the thick of it. I’m sorry you have to go through this as well and I hope my experience gives you hope. I happened to be subscribed and just got your comment in my inbox and couldn’t not reply. <3
Kelly
Hi Danielle, I’m so sorry to hear this, I know how hard it is! It is just exhausting. I know when my son had a cold or infection it all seemed worse because he got louder. I will be praying for your daughter and you! Take care!
Katie
Hi there,
Thank you for this post! I came across it while searching laryngomalacia. My 12 week old son has been diagnosed with the same. He is a very happy baby but I am struggling with his feedings. I thought we had things under control but these past few days he is taking less formula and spitting up more. He is gasping for air now during feedings. Did this happen with your baby? I just want to makes sure he thrives.
Kelly
Hi Katie, I would suggest talking to your pediatrician or ENT. I did not have the experience of my son gasping for air during feedings. The best thing to do is to talk with the doctor and find out what they think. I know how hard it is to hear the noisy breathing and deal with the worry, it’s not fun! I’m so sorry, and I will be keeping you and your son in my thoughts and prayers.
ahesterman79
Thank you so much for this. I actually searched google forever trying to figure out what was going on with my daughter’s breathing and came across this term. Last Monday she was diagnosed (based on sound) by the pediatrician, and tomorrow morning we have an ENT appointment to confirm it. I have literally been having panic attacks about this and its so hard listening to her at night. Thank you SO much for this. I can’t even imagine the days ahead, but this gives me hope that they will get better. She is now almost 2 months and the sound has definitely gotten worse. Did you have to put your LO on acid reflux meds?
Kelly
Hi there,
I am so sorry to hear that your daughter has laryngomalacia! I know how you feel,it is sooooo hard to hear the crazy breathing noises! And I was so very worried that my son was not getting enough air. We did do a sedated bronchoscopy so that they could have a look and see how much of an obstruction there was. His LM was moderate. I talked more about that process on my blog here:
http://theprettybee.com/2012/03/so-now-we-call-him-squeakerpart-1.html
http://theprettybee.com/2012/03/so-now-we-call-him-squeakerpart-2.html
It DOES get better. The worst of it was from about 2-4 months for us. He literally sounded like a honking goose for awhile, it was THAT loud. So crazy. I did not do reflux meds, I breastfed him, and I made some big changes to my diet to make sure that his spitting up was minimized. I eliminated dairy and gluten along with a few other things. Many moms choose to do reflux meds for their LM babies, it just depends on how severe the reflux is, and what you are comfortable with as far as medicine goes.
Feel free to email me with any questions! I am happy to share my experience. My son is 20 months old now, and the sound is pretty much gone. We just hear it rarely when he sleeps. :)
Best wishes to you!
Rosalia Giuca
Hello my son was diagnosed with Laryngomalacia at 2 weeks old. It was very rough. He has bronchoscopy back then and all was normal. They told.me by 12 months it should be gone. He never had feeding or drinking issues, thank god. But was loud as could be. He is 15 months now. And yes it’s a huge improvement. You can’t hear it anymore unless he takes a deep breath or if he is sleeping he is a little noisy. It feels like never ending. My fear is that this will never go away. I have read horror stories of kids who have it even at 4/5 years old. I wanted to know if your child completely grew out of it and when. Thank you so much!
Amanda
I commented on this forever ago but saw your comment in my in box – my daughter is 8 now and yes it went away! I can’t remember when I almost never think of it now! But it was way before age 4 or 5 so don’t worry they won’t always be noisy!
Rosie
My son was born we LM. It was horrible the first few months. He is 15 months now. And he has improved a lot. You cannot hear it during the day at all unless he takes a deep deep breath or during the night it drives me crazy he becomes noisy and he seems restless. Some nights he is quiet at night. I feel like this will never go away. Never had feeding or drink issues.
kimmie
Oh my goodness, I don’t even know how I’d deal with everything you’ve gone through. GLad he’s getting better!