What do you folks know about this condition/disease/disorder, or whatever
it may be?

I have a client whose baby was thriving, smiling, developing well, for the
first 4+ months.  Then she had surgery for a severely misshapen head.
After the surgery she grew less responsive. She regressed in development
and general muscle tone.

She had a breathing crisis when she was 6 months, which led her to the
hospital. With an ongoing battery of tests, one thing that has been
discovered is that she is not absorbing Vit B12.  She was on IVs for a
couple of weeks and now has a stomach feeding tube because she lost her
suckling capability during the IVs. This seemed to be part of a general
loss of muscle tone.

In all of this, "of course", breastmilk has been withheld.  They can better
discover what is wrong with the baby if she is on the measured concoction.
Well, now they have her on Similac with Iron and the concoction, but will
not allow breastmilk because they need to know how much....

They still are not certain of what is going on, but they suspect
Methylmalonic
Acidemia.  Her acid amino levels are too high.  Mom has been told that she
can't give her breastmilk because her milk will make it all worse.

She was keeping in a good supply for a while, until the dietitian told her
that she was wasting her time because she would never be able to feed her
breastmilk again. The gastroenterologist said to ignore that, because there
is no indication that she couldn't return to the breast. He's a real bf
advocate, but even he isn't saying return to breastmilk.  Mom says that
several doctors are meeting about the case regularly and they, together,
decide what is to be done.

Mom and Dad are totally overwhelmed and frightened.  Mom is pumping again,
but can't understand why her baby can't have her milk instead of "plain old
formula." She breasfed her 2 1/2 year old son and wants to feed her sick
little girl.

Someone believes that this rare condition is what this baby is suffering
from, and they keep doing tests to "prove" it. (My bias is showing here.)

Baby is home now and is beginning to suck on a pacifier.  She is also
looking at people.  When she entered the hospital she wasn't focusing on
anything or anyone.  She was in bad shape.

Have you heard of this condition?  What do all of these symptoms sound like
to you?  If you do know about it, what about breastmilk vs artificial baby
milk? Is it just a product of the prevalent attitude that they can trust
abm more than they can that nebulous breastmilk?

This happened while the baby was breastfed, so it is assumed that
breastmilk is part of the problem.  If baby had been abm fed, where would
they have gone?  Would they have called the breastmilk bank for human milk?

Any enlightenment will be appreciated.  I am just encouraging her to
maintain some milk supply so that "when" she can return to breastmilk there
will be some.

Pat Gima, IBCLC
Milwaukee, Wisconsin



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