Many of you have written me about WHY does the 4 mo old need nasal dilations
so please bear with me as I try to answer here. Most of my information is
from the mom.

For the life of me I can't remember what the defect is called but I'll take a
stab at *coannal atresia *  [If any one knows what it IS called, please
enlighten me]
I've seen pictures of congenitally blocked nares but didn't realize how
serious it is. I have never seen anything like this and hope to never see it
again.

From what I understand the nasal cavity never developed in fetal life. It's
like there's a solid wall between the mouth and the skull [from the mouth to
just below the eye sockets], built of cartilage and bone.  No space between.
The soft palate is so large that it blocks the airway in the back of the
throat. There may also be some problem with the trachea itself.  Neurological
damage may be associated with the defect. I think this has something to do
with the apnea and the cardiac irregularities.

What the docs have to do to this child--I wouldn't wish on anybody!! They use
their fingers, going through the mouth up into the back of the nares to A)
manually dilate the nasal passages and B) remove cartilage or bone tissue as
needed to make the opening big enough to breathe through. These procedures
have to be done repeatedly as the child grows.

Right now this little one has tubes in the nose about as big a pencil leads!!
 The tubes have to be suctioned and cleaned several times a day. A blockage,
according to mom, could be fatal.

I can see why the baby doesn't convert to mouth breathing--because the
passage is blocked. What I can't understand is why a tracheostomy hasn't been
done.

The baby apparently aspirates quite frequently into one  of the lungs. I am
really greatfull that the pedi insisted on breastmilk. She told the mom that
*given the situation  there would be repeated infections as the formula would
provide a medium for bacteria while breastmilk would kill anything that might
be present.* I think that's why mom got so depressed when her supply began to
dwindle.

Keep her and baby in you thoughts. I have serious concerns that this little
one may not survive for very long.
Marie