MARCH OF DIMES | MARCH FOR BABIES | NACERSANO

Laryngomalacia & Tracheomalacia - All Discussions Combined Here!

Hi Share members, We had several discussion going on laryngomalacia and and tracheomalacia on the site. I received a couple emails requesting that all of this information and the family stories be combined/condensed so members can find each other and ask/answer the medical questions all in one place. Here all the topics have been merged. Please note that several conversations are being merged into one, so the flow might be a little awkward at first. But the end result of having everything in one place will be worth the growing pains. This conversation is for families/careigivers of children with laryngomalacia or tracheomalacia to find and support each other, as well as ask and answer pertinent questions about this medical condition. Laryngomalacia soft larynx, is a congenital abnormality of the laryngeal cartilage. It is one of the most common reason for infants to experience noisy breathing or stridor. Tracheomalacia, soft trachea, is a structural abnormality of the tracheal cartilage allowing collapse of its walls and airway obstruction. It is also one of the most common reason for infants to experience noisy breathing or stridor keywords: floppy airway, laryngomalacia, tracheomalacia, broncoscopy, chronic cough, broncolamalcia, stridor
Darcy Milder

286 Replies

  • davidbrucs

    In reply to Ange*:

    I and my DW are looking for Good baby Monitors for our New House.Bluetooth baby monitors sound like a good idea, but some of my friends told me it May not have longer range on other room.Anyone has suggestions?
    And what brand of Baby monitors has the longest range?
  • annieb

    In reply to princezvee:

    Re: new traecheomalacia dx
    hi Princezvee,
    Welcome to share. its 1am and im reading your story about baby Christopher whilst my Thomas is tucked up next to me stridoring away in his sleep.
    My baby Thomas is now 10.5 months old and was diagnosed with laryngomalacia at birth. He has always been a really noisy breather so i completely understand why you are up at 4am worring about him. It has been a long and scary journey so far and i agree, nothing like listening to your baby struggle to breathe to freak you out.
    Thankfully we are very blessed to have wonderful Drs who have been absolutley fantastic and looked after us beautifully. But even with their care and support, it is still us listening to him every day and night and worrying if his breathing is going to stop.
    The laryngomalacia has cauesd sleep apnea and also has associated silent reflux which many malacia kids have.
    Thomas wears an apnea monitor which alarma if he stops breathing for longer than 20 sec. He had quite a few instances of turning blue when he was younger. He had a sleep study done at 3 months to support it. The study found that his breathing was worse when in a capsule or bouncer as the position didnt allow him to extend his neck to self correct his breathing. From then on we always made sure that he could stretch his neck backwards and that helped alot. He was unable to breathe lying flat until about 4 months old and then he would just roll himself into a position which he could breathe in. But because of his reflux, he still doesnt manage lying flat at all.
    thomas has a cot in his bedroom but he needs intervention so many times during the night that we found it easier to elevate our bed and have him in with us. plus its nice to cuddle him and be able to hear his breathing/refluxing.
    My paediatrican suggested a technique to keep him elevated in the cot.... elevate the mattress with pillow or whatever... then get a big pair of nana undies and secure them to the mattress and slide the baby into the undies with legs through the leg holes. I never tried it but sounds good in theory. Apparently it works. I also did/ do tons of research on reflux and laryngomalacia. there is a wedged pillow called an AR pillow (anti relux) available. It is and elevated pillow in a wedge shape that has a belt to secure the baby into position. it looks great but Thomas was too old for it when i found it so i didnt try it. Look it up on google. it maybe helpful. Does christopher have reflux too?
    Good luck with everyting. keep us posted as we will be thinking of him. YOu can read my early posts to get updated with our history.
    The best advice i can give you is...
    .try and remember that he is stilll a tiny little baby and not to get consumed with his extra needs. he will grow so fast that you dont want to miss it.
    . find a paed/Gp that you trust and can have a good relationship with
    .stay away from anyone who is or has been unwell as our kids are at greater risk (we have a 2 week rule. if youve been sick in the past 2 weeks then stay away)
    . check with people before you meet up with them if they are unwell
    . Educate yourself as much as possible and seek advice from others in this situation .This site is invaluable as other mums understand and give great support
    .listen to yourself as nobody knows your baby like you. Fight, fight fight if you have to and be his advocate. hopefully you wont need to. but always trust your instincts

    Apart from all of this, just love and enjoy him. My little boy is such a beautiful little soul. It may be comforting for you to know, that he sat up and crawled early and is almost walking at 10 months. He is slow with his swallowing but otherwise i a normal little happy baby who smiles all day long (and breathes loudly)
    look forward to following your journey. let us know if we can help
    Take care
    Annie
  • 7angels
    princezvee
    It really disturbs me when the doctors do not listen to us mothers. A mother always know when something is not right with her baby. The doctor at first tried to tell me that my son just had some amniotic fluid left in his lungs that would go away over time. He was a very noisy breather. It was soooo loud at times that I could hear him breathe when I was in a different room. After 6 months of this I finally got someone to listen to me seriously. That is when they did the bronchoscopy and discovered he had tracheo and laryngo malacia. His airway was at 60% occlusion (blocked so to speak) Of course they said it would self resolve by the time he was a year old and not to worry about it. If he was to get a simple cold we always ended up in the ER for him to get oxygen and breathing treatments then send us home. Over time I had asked for them for some oxygen so I would not have to keep going taking him into the ER all of the time. They refused to give us any oxygen. His color has been known to change to pale white, to purple, to blue, and sometimes even to gray. All of which would indicate low oxygen. My son also has sleep apnea and the doctor still will not give him a monitor for that. Instead they just removed his adnoids and tonsils. Which did help but when he is sick the apnea episodes increase. A spot check O2 monitor is one that I put on his finger for a moment and it gives the oxygen level and heartrate level. There is a monitor that would be placed on for lets say for overnite or all of the time to keep a constant check. My doctor would not prescribe my son one of these monitors because his case was not severe enough and there would be too many false alarms on the monitor which would be more of a headache than its worth. I did not feel that way so I found a medical supply store that had one and we had to pay for it ourselfs ($235) But it has been well worth it. I could use it to know before he begins to change colors as when he needed to go to the ER for oxygen. My son is now 2 1/2 yrs old and still has issue however things are better than they use to be. At his last bronchoscopy he was only 30% occlusion. My best advice is listen to your intuition and do not stop bugging the doctors until you get a straight answer. My son has been thru a lot and sometimes I had to get ugly. Like for instance when my son was in the hospital for having surgery and he had to be put on oxygen. One nite his oxygen level was in the mid 80's and they could not get his levels up they even had to use the ambubag which still did not work well any how they were going to send us home with NO oxygen the next day. I got irrate about that decision. Well, anyhow he ended up staying in the hospital for 8 days. Today he is doing fine and we are praying for an easy winter this year. Please keep us informed on how things are going.
    Take care
    Merri
  • princezvee
    Hello again. My son Christopher is 7 weeks. I took him to the Dr. because I thought his breathing was related to a cold and congestion. When I tried to explain to the Dr. on duty (not his pediatrician) how his throat (neck) seems to cave in when he breathes she just brushed me off saying it was normal. Of course he was awake when I took him to the Dr so she would not see what I was talking about. She just said he had a cold and told me to get a cool mist humidifier. I later went on line and was reading about periodic breathing because Christopher has this also. The article online said that if I was concerned about my baby's breathing to videotape him. That's what I did and took it in to his pediatrician. He watched the tape and that's how he came to this dx, but said Christopher should grow out of it especially when he picks up more weight. But with your experience, I'm afraid because it's been a while for your little one. I went to a different pediatrician the next day, after going on this website and reading the different stories about this, and the dr just brushed me off. I asked about a monitor for apnea and he gave me some excuse. Whats a spot o2 monitor. I am concerned that Christopher is not getting enough oxygen. The doctor says if he's not turning blue then he's ok. That to me seems too late. If there are signs like a low 02 reading before turning blue, I would like to know ahead of time.
  • 7angels
    response to princezvee
    First of all I would like to say Welcome. I myself have a child that has tracheo and laryngo malacia. We have been dealing with this for 2 1/2 years. It has definitely been a roller coaster of a life. Just how did your child get officially diagnosed? My son had a bronchoscopy done at 6months old. How old is your son? When my son was a baby he slept most of the time in his swing and sometimes in his carseat. He always had to have his head elevated. He also has obstructive sleep apnea so he had his adnoids and tonsils removed. That did help but did not totally eliminate it. He also has asthma and reflux issues. This does complicate the malacia to some extent. Do you have any monitors for your son especially while he sleeps? We only have a spot check pulse oxmeter to check his Oxygen levels. I hope your son is doing well for now. Things can sometimes get rough during the winter months. Kids with colds can be a lot worse if they also have tracheomalacia. Any time you need advice, vent, or just to chat there is always some one on this sight who will listen. Take care!
    Merri
  • princezvee
    traecheomalacia
    Thank you for your advice. Did your doctor do a sleep study test or apnea monitoring? I want to convince my dr to do some type of monitoring?
  • Ange*
    Re: new traecheomalacia dx
    Hi & Welcome! My son has a severe case of Tracheobronchio Malacia. I also positioned the head of his crib at a 45 degree angle to help with his reflux but yes he does slide too. :pbpt: One thing I found out is that he likes to sleep in his boppy pillow. He can position himself so his head does lay back some making it easier for him to breathe and he's not as noisy. Also his doctor told me when he was 5 months old that it's ok for him to sleep on his tummy because all children with his condition tend to realize it's easier to breathe that way. So once he learned how to roll it didn't matter how many times we laid him on his back he would still roll right over. But of course I'm just as nervous as you are and I always sleep next to him. It's the only way I can sleep too! :wink: Let me know if you have anymore questions! You've got lots of great people here to talk to and lots of great advice to receive from everyone!
    Hope this helped!
    -Ange*
  • princezvee
    new traecheomalacia dx
    Hi, first time here and its 4am. my son christopher diagnosed yesterday w/traecheomalacia,they say a mild case but nothing puts my mind at ease when it sounds like my baby cant breathe or at any second he is going to stop breathing. i was reading a posting earlier about having him sleep on his side and let his head hang back as far back as possible. how do i do that in his crib. I tried to elevate his head by placing a pillow under the mattress, but that just makes him slide down in the bed and his face ends up in between the blocks that you use keep him positioned. the breathing is at its worst on his back, but with sids i dont know really how to position him without putting him at more risk. please help.
  • Ange*
    Re: Laryngomalacia & Tracheomalacia - All Discussions Combined Here!
    I'm so sorry for what you've been through! Matthew is such a strong little man! I hope that you & your family keep heading forward from here on out! Keep us posted on how his appt goes tomorrow!
    Love & Prayers
    -Ange*
  • 7angels
    To everyone

    We are now home. Matthews lab work today was ok so they let us go home. However I have to followup with the pediatrition tomorrow. I will keep you guys posted on how things are going.
    Merri
  • 7angels
    Angel Love

    Thanks for responding. I did get a pump from the nurse. Even though I pumped by breasts are still hurting. Come to find out Matthew has developed thrush and now I have to use an antifungal cream on my breasts because they are being affected by the thrush. This might be why he is not eating very well, his mouth is hurting. Right now he is sleeping good. He has been asleep since 2:15. I just thought I would slip away from his room for a little while. It seems like he knows when I leave the room because when I return the nurse tells me that he begins to cry within 5 minutes after I leave the room. Tell me, how does a sleeping baby know this? I think I will head back up to his room.
    Merri
  • Angel Love
    Re: Laryngomalacia & Tracheomalacia - All Discussions Combined Here!
    Merri~
    I'm so sorry that things are so overwelming right now. I'm sure the hospital has a pump for you to use if you'd like. That would at least take some of the stress off. Please know that your family and little Matthew are in my thoughts.

    Tracy :grin:
  • 7angels
    annieb

    I was just now able to get away from his room for a little while. Today he just does not want to sleep much. Yesterday he literally slept all day. His appetite is way down. He is only nursing every 5-6 hours instead of 2-3 hours. They are backing off on the IV fluids a little bit just to see what his output would be. They think that the infection entered through his navel. The umbilical cord fell off early and for 2 weeks it continued to ooze goopy stuff and a little blood. The doctor said that there was no local infection there but the infection could have entered there and got into his blood stream. If I had just waited until the next day and had taken him into the peds office he could have gotten VERY sick. My gut feeling was to take him in when I did. God gave moms an intuition about there babies and the doctors really need to listen to this instead of just blowing it off and saying things like "you are just over reacting, everything is fine" With my son Buddy I sometimes had to get really ugly to get someone to listen to me. A mpm has to be an avocate for their children. Buddy had another episode of the croup sounding cough this morning. Luckily he was ok since I had his xopenex with me in the diaperbag and the nebulizer is in the van here at the hospital. My husband could have called 911 if there was major breathing difficulty. The problem there would be EMS only carries albuteral and Buddy can not tolerate albuteral. Thank goodness everything turned out just fine.
    If we can get Matthew to eating good we might get to go home tomorrow. I am so engorged from him not eating as much and I do not have a *** pump here. I suppose I could ask the nurse if the hospital has one I could use. I suppose I had best get back up to his room. My lunch tray should be arriving soon and I am starving. I can't afford to buy food in the Cafe cause money is very tight. Especially since my husband lost his job 2 weeks ago. I do not think my life could have any more stress. I am mentally and physically exausted. I will try to get online later.
    Take care
    Merri
  • annieb
    Re: Laryngomalacia & Tracheomalacia - All Discussions Combined Here!
    Oh Merri,
    i cant believe it. You poor thing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!Poor little Matthew(love the name). im almost lost for words. After all you have been through it just doesnt seem fair. Thank god you trusted yourself and took him to be assessed.
    I wonder how he caught meningitis so early? were any of the other kids sick?Is it viral or bacterial meningitis? i guess if he's IVAB then its bacterial. The poor little guy. I hope he is getting better. Thankfully it is something it is managable/ treatable and hopefully he can move forward.
    You must be exhausted. its hard enough just having a new born but with everything else youve been through its just not fair. Hopr your ok. kiss him from us and keep us posted when you can.
    Your in our thoughts and prayers
    Annie
  • 7angels
    IAmommy

    My son was born being a noisy breather. The doctor insisted that it was just amniotic fluid in his lungs that would just take time to clear up. Well, after 6 months and still being a noisy breather as well as having one major illness after another and breathing dificulty the pulminoligist ordered to have a bronchoscopy done. At that time is when they discovered that he had tracheomalacia and laryngomalacia. He was at 60% occlusion. They told me that by the time he would be a year old that all of this would be self resolved. It has been a long haul in the last couple of years with severe illnesses, breathing difficulties, numerous trips to the ER, and several admissions to the hospital. He is now 2 1/2 and is currently at 30% occlusion. He is getting better but it has taken longer than expected. If you look back at some of my earlier posts you will see what we have had to deal with. I sure hope you child does okay. Please keep us updated. Someone is always on this site and will give words of encouragement and advice.

    annieb
    You will not believe what is going on now. On Thursday my new baby, Matthew Alston, was extremely fussy. My first thought was maybe he had collic. This crying went on for 12 straight hours. I finally called the doctor on call and she told me to bring him into the ER just to have him looked over. She said it was probably nothing major but it is better to be safe than sorry, especially since he is only 26 days old. Well, after a lot of tests it turns out that he has spinal miningitus(SP). It was caught in the very early stages. They immediately begain antibiotics and admitted him. All I wanted was a healthy baby. I am over cautious about keeping germs away because my son Buddy gets so sick even with a cold. I just do not know how he was exposed to this. He is doing much better now and he is not in the PICU. If I had waited until the next day and had takem him into the pediatricians office he could have been severely sick. Today he has slept litterally ALL day and has only woken up to feed 4 times to feed. They had to increase his IV fluids due to him not having much output. I will keep you guys updated on how things are going. I am extremely tired so I am going to go and try to get some sleep.
    MERRI
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