Bilateral Vocal Cord paralysis

[McKinley's mommy 71211]

Hi I had my daughter at 40 weeks gestation age on 7-12-11. A full term baby, to make a long story short, she came out making a really weird sound just not a real cry and was taken to the NICU. I was not able to see her for 24 hours because I had fever while giving birth, but her daddy would go to the NICU and see her. They called this noise Stridor. The following day a ENT doctor came in and ran a scope and discovered her vocal cords were not moving, they had a small space in between them. When she cries her stridor gets worse and she desats and oxygen is given to her. The ENT dr wanted her sent to Le Bonheur Childrens Hospital of Memphis Tn where we are from. So we got transferred there. There she has underwent Gtube and Nissen surgery 7-28-11 to be exact. Today 8-3-11 she had to have emergency surgery because a X-Ray showed free air in the stomach. When they opened her belly back up they realized a hole in the stomach and stiched that back up. Shes back now and seems to be doing ok but of course they have her on pain medicine and keeping her sedated. She wont be able to be fed through her tube for at least 5 more day, this makes #4 of off again on again feeding, so I know she realizes shes going without. Her ENT came in yesterday and said as long as she keeps doing this well he thinks she wont need a trach. But then this today of course surgery she had to be intubated and he said at her first surgery he was worried after intubation she would have to be trached. So now I'm scared to death when they take the breathing tube out its going to go down hill and they will have to trach her for sure. I'm just ready for some good news seems like when she starts doing well BAM something else happens. Im a new mom first child never even heard of any of this stuff that she is going through. Can someone help me understand a trach and bilateral vocal cord paralysis. Does anyone know any cases where a trach hasnt been needed. I'm lost I'm sorry to just ramble on and on and type a whole story book, but hopefully someone can help calm me down and give me some advise. Thanks so much. My name is Ashley my baby girl is McKinley

[Sweet Harrison's mommy]

Hi Ashley. I don't really have any specific advice regarding your daughter's condition, but I wanted to welcome you to the site! I know how scared you must be. My son was also born full term at 41 weeks and everything was just so unexpected. It is a lot to take in.

I will say that it is really great news if McKinley has been off of a ventilator since birth. Hopefully she will recover from this most recent surgery and continue to carry on without additional help. That is great news to hear from the ENT. Until you are told otherwise, try and focus on that.

I wish I had more advice, but the parents on this board have been extremely helpful to me, so I'm sure some more experienced voices will chime in here soon:)

Good luck with everything! hang in there...

[McKinley's mommy 71211]

Thanks so much Susan for your reply.

[glowingpurpleaura]

my son has bilateral vocal cord paralysis (aquired from vent at birth) and stridor but was not trached until age 3 (home oxygen till 14 mhts old) because that is when they decided he was out growing his airway.

So yes , to answer your question it is possible to remain untrached with this condition. I"m not sure about indefinaltey un -trached because we ultimatley ended up with one because the cords dont move you cant get enough air in.

Vocal cords move in and out as we breathe so as the child gets bigger you need them to move more so you can breathe more if that makes sense? My son is now trach free after an opperation to put a graph from his rib into his airway and keep it open however we are now still facing laser treatment to free the cords more.

I hope this helps and that your baby has a quick recovery from her most recent op xx

[carrieanne]

Hi Ashley. My son was also born full term at 41 weeks. We didn't notice any stridor until he was about 6 days old. Our local pediatrician thought it was just minor but the next day we ended up in the ER after my mom saw him and insisted that we go. We found out that Ezra had bilateral vocal cord paralysis also and were given two options- be trached or go home with oxygen. They did a sleep study before we went home and found that he was having pretty significant apneas and was trached shortly after. It was terrifying at first but I am now so thankful that we went ahead with it. He was working so hard to breathe that he wasn't able to grow. His vocal cords randomly regained movement and he was recently decannulated.
I also wish I had more advice for you but always stay focused on the positives. Keep us updated on how McKinley is doing!

[JessicaLalonde]

Your story sounds exactly my son David's. He was nearly 42 weeks when he was born and had the loudest stridor. He made it to 6 weeks old before he got trached. It was definitely the scariest thing we have done but was our BEST decision. He is now 19 months old and his cords have regained most of their movement.. We are moving towards getting his trach out eventually as well.

Not sure if you are on facebook or not but there are a few of us whose kids have BVCP and can offer lots of assistance if you need it.

[glowingpurpleaura]

forgot to mention, that a trach can sorta be a good thing in a way. Becuase if a kid isnt getting enough oxygen it deprives the brain and the child can end up brain damaged, not to scare you or anything just saying if the oxygen levels are low enough that they want to trach there are some positives to a trach

[McKinley's mommy 71211]

Your story sounds exactly my son David's. He was nearly 42 weeks when he was born and had the loudest stridor. He made it to 6 weeks old before he got trached. It was definitely the scariest thing we have done but was our BEST decision. He is now 19 months old and his cords have regained most of their movement.. We are moving towards getting his trach out eventually as well.

Not sure if you are on facebook or not but there are a few of us whose kids have BVCP and can offer lots of assistance if you need it.


I am on Facebook. I am on this page on Facebook. Thanks for your reply the dr's seem confident that this is something that will heal itself.

[McKinley's mommy 71211]

Hi Ashley. My son was also born full term at 41 weeks. We didn't notice any stridor until he was about 6 days old. Our local pediatrician thought it was just minor but the next day we ended up in the ER after my mom saw him and insisted that we go. We found out that Ezra had bilateral vocal cord paralysis also and were given two options- be trached or go home with oxygen. They did a sleep study before we went home and found that he was having pretty significant apneas and was trached shortly after. It was terrifying at first but I am now so thankful that we went ahead with it. He was working so hard to breathe that he wasn't able to grow. His vocal cords randomly regained movement and he was recently decannulated.
I also wish I had more advice for you but always stay focused on the positives. Keep us updated on how McKinley is doing!


I will thank you so much. If I'm not asking to much was your son diagnosed with a reason of why he has it. My daughter they haven't found a reason so they are saying idiopathic BVCP. The MRI showed no neurological damage.

[Ainsley's Mom]

Welcome to the boards. There is good cause for concern and it could go either way. But....the fact that the vocal cords are paralyzed in a semi-open position it is possible she could have enough of an airway to not need a trach immediately. The fact that your ENT is optimistic that she will not need a trach is encouraging. There are kids on the boards with BVCP that their vocal cords have spontaneously started moving some time between 6-12 months of age. So in theory it is possible that she may be able to avoid a trach.

:hug: I'm sure you are scared to death. No matter what happens, things will be okay. Many of us have been through unimaginable things so we know what you are going through and can say with certainty that it will get easier, and you can do this! Try to enjoy your daughter as best you can because you won't get this time back.

[kharmasmama]

Welcome to the boards Ashley! This is a great place for info and also for writing out your thoughts ;) My daughter has the exact same diagnosis - bilateral vocal cord paralysis - and has been trached since birth.

It's hard to tell sometimes what vocal cord paralysis will bring. Lots of children outgrow it or can support their airways with minimal intervention. Others, like my daughter, will need a trach. If her ENT is optimistic, that's awesome. What hospital are you at, if you don't mind me asking?

Your situation is a scary one, I've been there. Live it one day at a time, one tiny step of progress at a time. And come here when its all too overwhelming :)

[carrieanne]

I will thank you so much. If I'm not asking to much was your son diagnosed with a reason of why he has it. My daughter they haven't found a reason so they are saying idiopathic BVCP. The MRI showed no neurological damage.
Yep, Idiopathic bvcp here too. I know its frustrating to not know why it happened but a good amount of children with idiopathic bvcp spontaneously get better. Ezra did sometime before he was was one.

[davidsmom]

My son was also born full term and had a stridor at birth so they took him to the NICU right away. He was intubated for a couple days and after they scoped him they determined bilateral vocal cord paralysis. My son was then put on CPAP utnil he was trached at 2 weeks old. He was not able to breath on his own, therefore was put on CPAP, he was not on any oxygen. My son's BVC is also idiopathic. He is 10.5 months now and as of this last scope last month his vocal cords are still not moving. It will get easier, as scary as the trach sounds, you make your peace with it if you have to. When they told me that David will need a trach, I had no idea what they were talking about, I couldn't picture what a trach is, so they took me to another baby in the NICU who was trached and they showed me. I was so scared. Now my son is thriving and just yesterday he go his speaking valve. Just take it one day at a time.

[McKinley's mommy 71211]

Welcome to the boards Ashley! This is a great place for info and also for writing out your thoughts ;) My daughter has the exact same diagnosis - bilateral vocal cord paralysis - and has been trached since birth.

It's hard to tell sometimes what vocal cord paralysis will bring. Lots of children outgrow it or can support their airways with minimal intervention. Others, like my daughter, will need a trach. If her ENT is optimistic, that's awesome. What hospital are you at, if you don't mind me asking?

Your situation is a scary one, I've been there. Live it one day at a time, one tiny step of progress at a time. And come here when its all too overwhelming :)

We are at le bonheur children's hospital in Memphis tn. Do they think your daughters will ever regain movement?

[kharmasmama]

We are at le bonheur children's hospital in Memphis tn. Do they think your daughters will ever regain movement?

Probably not - in face we're actually 24 hours post-op from a reconstructive surgery on her trachea. We're sitting in the Pediatric ICU as I type this :) We just came to terms with the fact that they probably won't start moving, and that leaving the trach in was going to cause more issues than trying to get it out. Her trach stabilized her for her first three years of life and allowed her to grow and develop normally. Now that she's big enough there are a lot of surgical options to move toward removing the trach.

Good luck with you little one - please keep us updated, even if you don't go home with a trach. It's always encouraging to hear about kids with the same diagnosis who can manage without one :D