Choanal atresia advise

[merristems]

Hiya my little girl is five months old and we have finally got a diagnosis of unilateral choanal atresia. Does anyone have experience of this? I'm wondering if they will operate now or later. Also how fast Did it heal, were there repeat operations. Any experiences greatly received. Xxx worried mummy. PS I hope this is the correct place to post.

 

[sequeena]

No advice sorry but wishing you the best x

 

[BlueHadeda]

I'm sorry, I don't have any advice or experience either. Just hugs, and hope that the surgery goes smoothly and the recovery fast.

 

[kit10grl]

Hi. DD was born with choanal atresia. Hers was bilateral though so she was unable to breathe or feed at birth. She also had a heart defect that neededsurgery too. They operated on her heart first but because her airway was blocked they kept her ventilated until they could operate on her nose a few weeks later. She was 3 weeks old when they operated on her nose.

Your DD is obviously getting enough air to survive or they would have discovered the problem before now so not sure if it will be such a hurried procedure for you. They will operate fairly quickly though as its an airway issue. The procedure varies depending where you are. In some cases they will remove enough of the bone/membranes blocking the airway and leave it at that. Other places will place stents for 2 weeks and others still leave the stents in place for up to 6 weeks.

Stents are small plastic tubes left in the nose for the healing tissue to grow around preventing them closing the airway over again. At lot of people I have spoken to online have had no tubes or only for a few weeks and have averaged somewhere around 5 procedures to have it corrected. Others who have had the tubes in longer tend to have less need for the procedure to be repeated. DD had stents in place for the full 6 weeks and just over a year later needed a follow up procedure to remove some more bone and widen the nasal passages. She didn't require stents the second time round.

Hope this helps a bit. If you have any other questions feel free to ask and I will do my best to try and help.

 

[merristems]

Thank you so much I was starting to think we were the only ones. Its taken us an age to get diagnosed. I've known since birth something was up but they kept telling me it was birth mucus or a cold. I guess I'm worried about aftercare. I've read I may need to suction airway. All a bit daunting but I guess I will learn.
I hope your Dd is OK now. Sounds like she has had a lot to deal with and you too. thank you once again.

 

[kit10grl]

The nurses talked about us being taught how to suction the tubes. As DD was in hospital for the whole six weeks it never happened. One of my friends had learned how to do it and while it was needed she was given a suction machine to carry with her to use when needed. It all seems very scary at first but you quickly get used to it. I ended up able to pass an NG tube on my own and have now done it hundreds of times. You will be amazed at the things you can adapt to.

 

[Nikkiole]

How are your little ones Going now? My now 11 week old daughter was diagnosed with bilateral coanal atresia at birth and spent the first 7 weeks of her life in hospital. She had surgical stents placed in but then removed at 6 weeks. She had them placed in at 10 days old and got them taken out just before we left hospital to come home. She's had a total of 5 operations and has to have one every 2-3 weeks. In a single
Mum so this is so hard on me. Are your stories similar. Would be so appreciative if you could tell me what's happening with your ones now?

 

[kit10grl]

How are your little ones Going now? My now 11 week old daughter was diagnosed with bilateral coanal atresia at birth and spent the first 7 weeks of her life in hospital. She had surgical stents placed in but then removed at 6 weeks. She had them placed in at 10 days old and got them taken out just before we left hospital to come home. She's had a total of 5 operations and has to have one every 2-3 weeks. In a single
Mum so this is so hard on me. Are your stories similar. Would be so appreciative if you could tell me what's happening with your ones now?

Hi as posted above DD had a second repair done on her nose about a year after the first that was about 9 months ago and we have had no issues since. Her ability to move air has improved so much in fact we finally managed to get her off of NG feeding and now she feeds orally completly and is almost caught up to where she should be on feeding.

I do however know a few people who have the same condition as DD who have had to have the procedure repeated many times like you. Do you know why they are repeating the procedure? Is it that the membranes are regrowing or is it scar tissue they are removing every few weeks?

 

[merristems]

Hiya nikkiole, it must be really tough on you I can only imagine how hard it is for you as a single mum.

My dd has unilateral Choanal atresia which was finally operated on six weeks ago. Our surgeon doesn't use stents so I cannot comment on that, but I have to say dd seems so much happier since her operation. We are due her second operation next week to see how its healing and to check if the scar tissue needs stretching out again. We were told to expect up to five operations to get it right but hopefully less, it just depends. She's had her first cold since the operation now and it was a lot easier than when she only had one nostril for nine months!

I hope you lo heals soon xxx