my 17 month old needs surgery to remove half of his lung due to having cysts on almost all of his left lung (CCAM). He seems really well in himself but after a much overdue CT scan, his consultant is worried that his cysts may be cancerous; they did think this when he was first born after a scan at 2 weeks old, however a scan at 6 weeks and a genes test that showed he doesn’t have the cancer gene seemed much more promising. His consultant told me when I was pregnant that he had never seen cancerous cysts in a baby’s lung in his 10 years of working although it is possible (they found the cysts at the 20 week scan). It may not be cancerous but they won’t know this until they remove the cysts and test them. This is major surgery, and even without the added worry of the possibility that this could be cancerous which would mean he needs chemo and may well need the top half of the lung removed too, I’m super anxious and worried. Me and my sons dad are only 18 and 19 years old. Our little boy appears so well, he’s amazing! His development is beyond what it should be, he hardly has trouble with his breathing (his chest sinks in more and always has but his sats tend to be good) and he’s just so precious. I’m really scared for him to go through this, if i could take his place I would in a heartbeat.
I’m just wondering if anyone else has been through this with their little ones - either the CCAM removal surgery and/or the cancerous cysts (I know this is extremely rare so maybe not) but if anyone could reassure me or give me advice on how to cope whilst my baby has his surgery I’d really appreciate it. I’ll be in hospital on my own as COVID rules mean only one person is allowed at a time. Positive stories/results would be greatly appreciated x