This is coming second hand from our PKU expert, but it makes sense. The baby most likely does not have PKU (he should be tested though), so the level of PHE would not affect the baby, because he can metabolize it.  The baby should be allowed to receive his mom's milk without any problems.

Daniela Torres Marco MS, RD. 


This information is privileged and confidential pursuant to Texas Health & Safety Code sections 161.031 - 161.033 and Texas Occupations Code section 160.007 and or T.R.C.P. 192.5.



-----Original Message-----
From: Lactation Information and Discussion
[mailto:[log in to unmask]]On Behalf Of Peggy Penovich
Sent: Tuesday, July 18, 2006 8:10 AM
To: [log in to unmask]
Subject: [LACTNET] PKU


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 tha=
t 
I have found says the PHE levels in breast milk are lower than in cows mi=
lk 
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 followi=
ng 
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 t=
o 
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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