Is there anyone out there that has been diagnosed with this condition I would like to hear from you. My daughter was diagnosed with it while in utero. For those who don't know what this condition is, it is where part or all of the lung does not develop normally and becomes filled with cysts, this happens within the first 8 to 10 weeks of gestation. It is an abnormality, it is not hereditry and in most cases it disappears before birth. We monitored it during pregnancy and it appeared to have reduced in size, we believed that it would surely be gone by birth. Our daughter was born with no complications and was sent for x-rays immediately, the x-rays came back with an all clear, we thought we were out of danger until just recently. I took her (now 20 months old) to the Dr as she was suffering with high temps, that I thought was just an ear infection, it turned out to be pneumonia. We were sent for x-rays only to find that it looked like pneumonia. We were referred to a paediatrician who then sent us for a CT scan, this came up showing all the cysts had not gone away as originally thought, they had in fact grown. We have now been referred to a paediatric surgeon who has told us that there is no way out but to operate or chance the risk of the cysts turning cancerous. Please is there anyone who has had this condition or knows anything about this. There is no support group that I know of and the condition affects 1 in 20,000 children it is quite uncommon.:(
Thankyou in advance
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