I am not sure if any of you have ever heard of this but my grandson was dx with this when my daughter was pregnet with him. It had looked as though it went away and the special doctor we were seeing said that he should have a CT scan within the first month to make sure. So he is now going on 6 weeks old and we are going to childrens hospital on Monday because the CT scan showed something. Of course they did not say what it was just said that we need to go up there and have a MRI with contrast done. I have noticed since he was born that his legs up to a little above his kness get a very dark purple color often and you can feel something moving in his right lung alot of the time. if anyone has had this or known someone I would really like to here about it. All the infor I find about it on the intrnet is before the baby is born.
The long name of this is Congenital cystic adenomatoid malformation .

Thank you

Good Morning Cord's Mom, Yes, i have heard of CCAM. At this point i dont think that i would be to aweful worried. Reason being is that this condition was picked up during the pregnancy and there was little to no change (obviously if at one point on the scan it looked as if it were gone) throughout the duration of the pregnancy. Fetuses that have small to moderate sized CCAM that do not change much during the pregnancy can be successfully taken care of after birth. If scans are to show that the CCAM mass is large or the baby is having difficulty breathing then it should be surgically removed
as this is to prevent infection or even cancer later in the childs life. The good thing is that the surgery is pretty safe when done during the first year of life and lung function will be completely normal without being compromised in any way even later on in life. Try not to worry yourself to death (i know, easier said than done) until/unless the Pulmonologist (i am assuming this is the type of specialist the baby will be seeing) tells you that there is something to worry about.

As far as the baby's legs turning bluish/purple, many babies lower extremities will often do this merely due to positioning. When you notice this happen again, change the position of the baby making sure that his legs arent dangling down or lower than his body and then watch to see that the color returns to normal. Should this not make any difference then pay close attention to his respirations being sure that they are not labored (signs and symptoms of labored breathing is nasal flaring, an inspiratory or expiratory whine as well as instead of his chest rising and falling steady and evenly you would see his abdomen sucking in and out). If the discoloration in his legs was due to his lung function being compromised then you would see color change in his lips, gums and fingernail beds.

I wish you all the best and sincerely hope that his appt. will put all of your minds at ease.

GloryGurl

Thank you for your info it was reasuring that it looks as though the prognosses would be good for him. With his legs they turn purplish/blackish up to his kness in any postion and do not change with movement. They become cooler at that time also. His hands will do it once in a while but mostly his feet and legs. His breathing is not normal, he breaths like he was just cring really hard and he is tring to catch his breath. It always seems like fast small breaths and as he gets older it seems to be getting worse.

Childrens Hospital will not do the MRI with general anesthesia because of his legs turning purplish color so we had to reschedule the appt. for a day surgery unit to put him to sleep with the anestheoligist there. Sut like my husband said if they are so worried about that why are they making his appt. 2 weeks away.

Thank you again