Wise Ones -
I just received this email from a mom I helped when her baby was born.  I've
searched Lactnet archives and can't find anything on this.  Anybody know what
this is and have any info to help this mom?
Pls email me privately (as well as posting to the list for future archives)
as I'm no mail right now.  Thanks!

<<We are currently in Critical Care with our 3 month old baby girl who was
breastfed exclusively until 5 days ago. She's been here since then. Through
testing they have found out that she has a rare genetic disorder called Long
Chain Fatty Acid Disorder. I'm told that "if" we leave here with her she will
be on a high glucose formula called Protegen (sp?). In the beginning I was
told that I may be able to breastfeed after she has had her formula but as
the days go by I'm unsure if this is true. Her disorder makes it impossible
for her to break down long chain fats that are in my milk. I've been pumping
about twice a day, but am at a point where I don't know if I should give up.
Have you ever heard of this disorder or any genetic disorders that would make
it impossible for a baby to breastfeed? We are having some difficulty finding
info on this disorder.>>

Cynthia D. Payne IBCLC
In the Berkshires of western Massachusetts

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