Hi again,

 My Brandon, including his Tetrology of Fallot, is considered  deaf-blind,
has low muscle tone and developmental delays, and has obviously been  very
different from his peers since day one. We were very lucky that everyone  around us
was very supportive and kind. But the facts were not. CHARGE syndrome  can be
a devastationg diagnosis and we deal with that every day. In the  beginning,
my post partum depression was so bad, that I really wondered if I  could ever
love this baby, or if I would ever be able to care for him. I  still have some
very painful emotions, but I've found comfort in people who are  in the same
boat. Is there a support group or email list for parents of babies  with this
type of brain damage? The CHARGE Syndrome Foundation really helped me  to see
the huge variation in these kids, and gave me some hope that we would
eventually be happy. Some of those kids are SO much sicker than mine, but there  is
still life there! It's also amazing how widely varied medical
treatment/philosophy is around the country. Being exposed to information about  how certain
issues are being treated often gives me ideas to bring to our  doctors. And I
even found a mom or two who had breastfed also!

 And I have to say, getting my milk, I believe, has made a huge  difference
in how Brandon is doing. It's like all of the benefits of human milk  are
tailored to combat all of his problems! I also got a lot of help from our  NICU
social worker. I did have to tell her what I wanted support for, and I set  some
pretty clear boundaries with anyone trying to give me reality checks. Those
really need to come slowly, over time. Having a baby with multiple impairments
is one huge, lifelong reality check. Whenever I hear stories like this, I
just  wish I could be there to hug that mom. Eventually, giving her baby her
milk, in  any way possible, will help her feel like a superhero. Even, sadly, if
the baby  doesn't make it, having shared that nourishment with him may be part
of a  healing process.

Shannon

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