laryngeal cleft??

[janmumto5]

Has anybodies Lo or does anybody know of anyone who's child has had/got a laryngeal cleft?

If what type did they have? We have just been told my dd2 has a type 1 cleft and this is the cause of her aspirating (silently).

It has also been discovered she has a slightly twisted windpipe which we are waiting for ct scan and heart scan to be done to see how twisted it is and if there is a problem with the heart that has caused the windpipe problem.

Would love to chat to any other parents etc who are going thro similar problem or been thro it. x

Hi Jan, this is not something I've come across before, but didnt want your post to go unnoticed.

My son has a type of cleft so I know whatt its like to have the worry gathering as much information as possible. It sounds like the medics are looking into this for you.

Hope all goes well.

not sure-- my dd has severe laryngomalacia (v floppy windpipe) It caused loads of feeding issues - she used to block off her airway when feeding, couldn't sleep on her back cos it would flop back and obstruct airway and she would aspirate loads

she is 4 now. We've taken some steps back with feeding so she only has blended foods spooned in by us / other carer (to control rate) She also does not have any fluids orally - all via gastro. However, she has been MUCH better chest wise (she had near constant chest infections prior to this)

Dunno if this is the same sort of issues you are facing. Thought I'd chime in a reply just in case

Hi thanks for your replys sorry for late replying back my dd was in hospital last week again she ends up in hospital whenever she gets ill.. bloods have now been taken to test her immune system and thyroids etc!

We had the ct scan today and heart ultrasound.. heart ultrasound was good news the registrar doing it couldnt see any problems and even had a ecg done which the nurse said seemed fine as well Just ct scan results to come back now.

herjazz the twisted windpipe isnt causing any problems that we know off and it was only discovered when they did camera to see if there was a reason why dd aspirates they found the reason then found another problem the twisted windpipe it just feels never ending and more so when there doesnt seem to be a reason why it is like that!! x

Forgot to add she has now been referred for a gastro peg to be fitted it will hopefully make life bit easier than the ng tube x