Laryngomalacia

[mommyofnathan]

My son has laryngomalacia.  He had a sleep study that turned out normal.   The ENT said that he needs an operation to remove the floppy tissue in his throat area which is blocking his airway and that he might need a tracheostomy in the near future.  Has anyone had that operation?  What exactly is done?  Doesn't one need the tissue in your throat????

[alwaysbelieve]

I did a little smidge of checking into this...I have to say I am curious as to how they came upon this diagnosis and surgical recommendation. If the tissue was in fact blocking his airway, there should be some indicator of that on the sleep study. A laryngoscope is usually done to confirm diagnosis and determine exactly which 'pieces' need to be removed.
Is Nathan having trouble breathing? Eating?
One of the studies/sites I looked at says the 'noise' can sometimes be heard until age 5. Most cases are diagnosed before 1 year and most children outgrow it by age 2.
I think I would ask more questions before I would go through with the surgery.
However, none of the studies I read has cited significant complications from the surgery. The surgery would be simillar to a tonsilectomy. There's just an extra piece of tissue blocking the airway when you breathe in. Since this tissue normally shrinks, there wouldn't be a 'need' for that so would be okay to remove.
I do not have personal experience with this, just raising a few more questions and hopefully some answers.

[mommyofnathan]

It started shortly after the accident.   It was only off and on but is now present constantly.  It seems that he won't outgrow it because it is caused by floppy tissue - his whole bndy is floppy.  A sleep study was done that excluded sleep apnoea at that time.  We went back to ENt becuase for one, the noise is driving me nuts!  and the most important, he has laboured breathing.  His sats stay healthy (high 90's) but there is retraction and his nostrils flare.  I am worried because surgery is not one of my favourite things since it was during a surgery that he "died".  I am scared because he sometimes stops breathing during a bad seizure and I have had to resuss him a few times.  If there is a blockage - what if resuss is unsuccessful?  I am afraid of having to do a homemade tracheostomy...  What I want to know is, will the surgery solve the problem, or will he need a trach anyway sometime?  I don't understand the concept of removing tissue from the throat - this is not a congenital abnormality with his anatomy.  

[carolyn4]

Hi, as you may know Ashleigh also has laryngomalacia, and when she was 2 1/2 she had laser micro laryngoscopy done on her and this was to give her a larger airway and what the doctors (and me) hope to also stop her stridor. Unfortunately this procedure did not get rid of the stridor nor give her a larger airway. We have been down the track many times of having two Doctors telling us that she needs a tracheostomy but my husband and i stuck to our guns and refused (quaility of life over quanity, and strongly believed she didnt require one). Here we are more than eight years later and now Doctors are telling me she doesnt need a tracheostomy. I had asked them is they think it should be a option because of her ongoing health problems. As far as one needing their tissue in their throat, Ashleigh has had no ill effects as a result of it (except getting a infection as a result from the operation).
I would  consider what you Doctor suggest but also go by your own gut feeling, If i had listened to Ashleighs Doctors all those years ago, She would of had an operation that wasnt necessary and one that would of lesson the quality of her life.
Goodluck  

[mommyofnathan]

Thank you thank you thank you.  All I wanted to hear.  We are on the same page here.  I agree wholeheartedly with quality over quantity...  I have decided that I will take him to the surgeon and ask for some patients he has done it on and then speak to their families - if most of them had no improvement, then my choice will be obvious.  How is Ashleigh doing now?? Still pneumonias?  Nathan aspirated last weekend and has developed acute urine retention now as well.  Home with a catheter now...I am hoping it is only the treatment for his pneumonia that is causing the retention.

[carolyn4]

Glad i can be of help, In the end i think it comes down to mothers instinct. Ashleigh has been going really well at the moment, It has now been six weeks since she has last been sick, unsure why but happy all the same that she hasnt been sick for a while.
Hope Nathan get better soon.

[joey17]

My son was born June 10 and they had to do surgery when he was 2 days old due to laryngomalicia.  The first few days he would turn blue and they had to up the oxygen to bring him around.  they only did one side of the throat and they may need to do the other if he doesn't improve.  he is home now on a monitor and we have the oxygen tanks just in case.  Very tough for my wife and I but we are getting through it.

[joey17]

I just noticed this is a cerebral palsy page and I posted re. my sons laryngomalica.  I don't know if the 2 are tied together but sorry if I posted in a wrong forum.

[CaringForFamily]

hi joey
my little brother was diagnosed with laryngotracheomalacia, and CP. altough the two are not connected directly, always keep in mind that because of laryngomalacia, there are periods in which your son has lacked oxygen, now this lack of oxygen could lead to some form of cerebral palsy, i dont want to alarm you because it doesnt mean that your son will get CP. this is just so that you will be aware of the possibilities and make sure that the oxygen is always available hopefully your son will not need more surgeries and i am sure that he is well taken care of, my little brother needed to get a trach tube placed because he just couldnt do it on his own anymore. dont worry we all can get trough this my brother is now 2yrs old and like they say "God squeezes but he does not suffocate"

[joey17]

I hope the best for your little brother and yes Brady-my son- is having another surgery next week to help him breathe better.  he hasn't gained any weight since he was born since he is burning all his calories trying to breathe.  the doctors think this will make him better as we sure hope so.  thanks for your insight and we hope he hasn't had to many drops in oxygen.