brochomalcia/heart problem getting answers finally

[janmumto5]

My dd has been ill on and off for last few mths in and out of hospital she had camera down her throat few weeks ago to see if they could find answer for why she aspirates they discovered she had a type one largenal cleft and also a twisted windpipe.. due to the windpipe problem they decided to do ct scan and heart scan to find out why windpipe was twisted i got the results yesterday as we have been in hospital for a week and half as she has devolped severe reflux now as well and was vomiting everywhere and has started reflux meds which have made huge difference and we can now try get her weight back up. results of ct scan and heart scan are

KM has a special heart. She has a slightly leaky valve which won't need surgery, and one of the valves is going right instead of left, but again won't need surgery, thank god. She also has a condition called bronchomalacia, which is a problem with a bit of her lung on the right side, but again not serious. The two together are causing her windpipe to lean to the right and twist. Luckily, she won't need surgery but will be more prone to illnesses etc. The doctor also said it might help genetics work out a specific syndrome she may have that causes all of these bits and bobs. Now fingers crossed that the barium swallow doesn't unearth any more problems

has anybody got experience of any of this? thanks xx

Sorry, no direct experience with the same condition, but have a dd2 with bronchiectasis which is different degenerative lung condition (amongst other problems) and have found plenty of help and advice on here.

How old is your dd? I'm sorry you've had a rough time, and glad the reflux is starting to settle down.

Hi my dd is 17mths now x

Hello jan. My dd has complex heart problems but no issues with her lungs (just the bit on the the way to the lungs). She had bad reflux as a baby although a lot of it was due to her ng tube I think and also there's usually a degree of vomiting when in CHF which she was for a long time. Do you think having the camera down aggravated dd's reflux? It's probably irritated her gag reflex.

Do genetics have any particular syndrome in mind?

Hi i personally do think the camera going down started it off as it was after the camera down she started having coughs after each feed and also the sickness started couple of weeks later i said that to my paed and he disagreed he isnt convinced it is reflux either tho..another consultant said it was severe reflux and started the meds!!

I have asked if k-m has angelmans as she has elf like face,huge eyes,very happy nature, hand flaps a bit and has the feeding problems and few other health issues. Paed is going to ask them to test her for it she also has low muscle tone and still isnt walking there a balance problem going on as well.

Is she tube fed jan? I've had an ng myself and it does irritate there's no doubt about it. If the meds are working then I would assume it's either reflux or the irritation after having the camera has settled.

Are they going to repair the cleft?

She is ng tube fed yea she has been for nearly a yr now but sickness only started 2 weeks ago which is what was so confusing!!

They are saying it only a type 1 cleft so the consultant has said he doesnt want to repair it BUT that means my baby will either have fluids via her peg or have to have them thickened my arguement to that is what about when she 18 upwards and has to go in a pub with her mates and order glass of wine of something and has to add thick and easy to it what kind of social life will that be it isnt fair she deserves the chance to be as normal as her friends not be different iykwim? It is so annoying x

I don't know anything about clefts. But I think my argument would be that if it was just the cleft alone then maybe no surgery would be the way to go but as she has other issues (the windpipe, lung, heart stuff) and if it's easily fixable and is going to mean less infections etc then the surgery is worth considering. I mean, if her lung is iffy then you'd want to remove any extra means of her getting an infection. That said it depends whether the other issues put her at risk under GA. Difficult isn't it? dd has had a couple of surgeries unrelated to her heart and I had to think long and hard about putting her through them and indeed her ENT surgery I decided wasn't worth the risk.

my son had tracio broncalmalacia (which i can never spell !) and odd wiring of the left lung ! he used to choke every morning and it would wake him up he also had reflux and would get chest infections but he is now 11 and they have all self resolved themselves. Interestingly he also has a high heart rate but they don't know why.

Just thought i would let you know that they can self resolve.