Hi does anyone have any experience of having a baby diagnosed with Congenital Lobar Emphysema?

[Cosmicdancer65]

[Hidden]

hi wat is that in a baby

[Hidden in reply to Hidden]

ive googled it baby can be treated

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Hi Cosmic

I'm sure you have done all the googling that can be done .... so I won't repeat what is already out there

I don't think anyone here will know much of such a very rare condition, certainly not more than your consultants

If this is about your child then I wish you strength, hope, and perseverance with the health service.

Be persistent and insistent, never take no for an answer

best wishes

Beth

[peege]

Hi there, I've been on this site for about 6 months and I've never seen this mentioned.

Is this your baby or yourself?

I would fight for the best medical treatment - I hear the Royal Brompton is the best.

Do ring the BLF helpline, they know lots and will point you in the right direction. 03000 030 555 all the best to you. P