Has anyone on Lactnet worked with a baby with a deficiency in Chromosome 8P?
The info that I could find with a google search indicates that there is
usually a problem with feeding.  Can anyone give me some ideas on how to
help the parents manage this in regards to breastfeeding?  I saw this baby
last Friday (not knowing of the genetic problem) to help the parents with
latch.  The mother has flat nipples and they stated the baby had never
latched since birth, even with a nipple shield.  The baby was 24 days old at
the time.  I felt there was something wrong because the baby held herself
rigid most of the time and even took a bottle poorly... obviously hungry,
but not willing to feed.  It was very frustrating.  I understood the parents
to say that the baby had been seen 2 days prior by the ped and that she was
always that way when she was being fed.  I didn't feel that the baby was
dangerously ill, and she *did* feed eventually, with a lot of coaxing, by
bottle and fingerfeeding.  Her weight gain was adequate.  Anyway, after
following up with the mother today, I called the Ped and spoke with his
nurse and mentioned my concerns.  It appears that the doctors office
referred this family to me almost 2 weeks ago.  I understood the parents to
say that a friend of theirs had given them my name.  There may be a cultural
barrier, language barrier (family is from India but seems to speak English
very well), or denial, or possibly a combination, but it worries me that
they never mentioned it to me.  The nurse told me that in this syndrome
feeding is difficult and if this baby doesn't improve they may be looking at
putting a G-tube in.  So my question is... how can I help this family?

What they are doing now:
Skin to skin as much as possible.  Mom says that she is doing this.
Fingerfeeding as opposed to bottle.  (Originally, I felt it might be a flow
preference issue)  Mom says that they are fingerfeeding occasionally, but
giving bottle mostly.
Mom is pumping with hospital grade pump.  Today I encouraged her to pump at
least 8 times x24 h.  When I encouraged her to increase pumping she said
that she already had and she was now pumping every 3-4 hours!  This was in
response to her mentioning that she felt her supply was decreased.
SNS with shield -- offer breast to baby first -- if baby gets frustrated or
angry, stop for that feeding and feed with alternative method.
I felt that the baby had developed an aversion to the breast and tried to
give suggestions that would help the baby feel comfortable and happy at the
breast, with no pressure to feed.  Now I don't know what to think.

Regards,
Cindi Swisher, RN, IBCLC

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