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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