I have a situation that I have never worked with before and am seeking 
wisdom.  A mother with a baby in the NICU has PKU.( I have permission to 
post) Mother did not follow her diet well during pregnancy and baby had 
very high levels of PHE at birth. Baby also has microcephaly and cardiac 
problems both of which are associated with high levels of PHE during 
preganancy. The doctors are reluctant to use mothers breast milk at this 
time due to concerns about high levels of PHE in  this mother's milk and 
thus further increasing the level of the baby. The limited literature that 
I have found says the PHE levels in breast milk are lower than in cows milk 
when mother is following her diet. I can not find any mention of what 
levels might be for a mother who is not following her diet. This mother 
says she is now following the diet, but has a long history of not following 
the diet dispite her OB's instructions. Does anyone know of a test for 
amino acids in breast milk or a formula for finding the levels in breast 
milk based on blood levels? At this time the baby is not medically able to 
feed and I am hoping to have some data to give the doctors before feeding. 
Thank you for all your help.

Peggy Penovich RN IBCLC
Miami Children's Hospital

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