My baby was born with tracheomalacia, anyone have experience with this?

Kymberly - posted on 01/22/2010 ( 4 moms have responded )




I am a mother of four, and my youngest daughter was born with tracheomalacia, which is a weakness of the windpipe. It makes her breathing very loud. Every pediatrician I have talked to said it will go away on its own as she grows, but with age it seems to be getting worse. At times it sounds like she cannot breathe, she stops breathing, and she has gastro esophageal reflux, which makes her cry a lot. Also, I would say she is slightly developmental delayed. She was born a little early because I developed preeclampsia, so I know this is normal. But she is not to far behind. For example she cannot sit very long supported yet and she is 6 months old. My question to mothers out there is, have you had a child born with this? And if so what were your experiences? Thanks!


User - posted on 05/30/2011




My son was born with Tracheobronchomalacia (TBM) with Innominate Artery Compression. He is 13 now. The loud breathing you hear is called Stridor. Most kids with Malacia have Reflux or Gerd. I saw development delays with my son. But I can tell he caught up, he is now in all enrichment classes. I think they get development delays becasue of how often they are sick. My son has had RSV, 6Pnuemonias, 6Bronchits' and 15Croups. He had his tonsils and adnoids removed at 10 it helped alot. He was swithced from Albutol/Xopenex to Atrovent via nebulizer ~which I think helped the mose. What meds does your daughter take? There is a support group on Facebook called Love for Malacia Babies and Coping with Larygomalacia. I think it would be helpful to check it out. Best of Luck


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Kymberly - posted on 01/23/2010




Thanks Karen for sharing you story. We have found that with my baby that no matter what position she is in, she breaths loudly, but we do try and keep her on her side, she seems to do the best that way. When she is on her back, is when we notice her stop breathing. When I compare her to my other 3 kids, she is a little behind, but the doctor says she is still okay for develop. She is 6 months now, rolls both ways, but is not attempting creeping or sitting up yet. She is a very alert baby though. My oldest son is speech delayed and has behavioral problems, but my other 2 seem to be right on track right now. With your son Jaykeb, did doctors ever tell you if the breathing noise would ever go away? I know when she was in the hospital after she was born, and at her 4-month check up, her oxygen-blood levels were borderline, but no one seems to think twice about it. I am wondering if I should not seek out even more opinions from doctors, or maybe even take her to an ear, nose, and throat specialist. With your baby girl Melissa, have they told you anything different then what they did with Jaykeb? Thanks for the alert mattress tip, I am going to look into buying one. Thanks again for your help.


Sheila - posted on 01/23/2010




Kymberly- Karen's response was extremely helpful, I just wanted to add, that you and your child may both benefit from Early Intervention Services. EI professionals who are familiar with this condition can not only help to get your daughter's skills at age level but can also act as a wonderful support system for you and your family. The plus side is they know all the best doctors =) Good luck

Karen - posted on 01/23/2010




Hello Kymberly,

My name is Karen I'm a mum of 3 and a step mum of 2. My eldest and my youngest biological children where both born with this condition.

Jaykeb is almost nine now, he was born 3 days over due and weighed 9 p 2 o. He was developmentally delayed and has a few other medical problems as well. He still has noisey breathing when he is asleep so when I hear him I go in and roll him over so he can breathe properly. I've found that if he sleeps with his head in certain positions this makes it worse.

Melissa is now 10 months old and she was born with a more severe form than Jaykeb. She was born on time by c section but was very sick when she was born. Melissa is also developmentally delayed. She stopped breathing when she was only a few hours old and has done at least once a week since then. Everytime shes asleep I can hear her breathing from the next room so I go in and roll her over. Melissa also has gastric esophageal reflux and she also cries alot.

All I can say is sleep when you can as you should roll them over or change their head position when you hear them breathing loudly as they are not getting enough oxygen. We also purchased an alert mattress which sets an alarm off when Melissa stops breathing.

I hope this helps and if you want to talk my email address is:

Good luck

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