WE have a baby in our NICU with Pierre Robin Syndrome, cleft palate.
3k200g, term baby, normal birth.  He was born Friday night\, but I was
only called in yesterday, so the first breastfeed was this morning. He
was getting EBM via  the H... feeder, and there was the usual choking
and milk leakage through his nose.
He  chokes less on the breast.   He latches on but there is no vacuum
because of the tongue formation typical in Peirre-Robin, however with
breast  compression, there is swallowing and he is getting some milk.
And he LOVES it!!!  Unfortunately, I did not observe a feed from the
H..........n feeder, but the parents say that   there is no comparison
in his behavior.  He adores the breast!!!

I am meeting with the plastics and dental team tomorow to decide when to
fit him for the obturator.

If anyone has any experience with these babies, I would love some
input.  Share your experiences.  This is my second  case of congenital
anomaly this week and I have been doing alot of good ole LLL listening
and counseling, empathizing, and even crying with these moms.  Even when
it isn't breastfeeding-related problem, do you notice that we always end
up spending the most time with the mom?  Do other hospital LC's have
this experience?

Sorry if I am inarticulate.  This has been a heavy week and it has only
just begun.

What I love most about these babies is that they seem to be saying "
good, good"  when they nurse, and, because these are Hebrew-speaking
parents, they are very pleased that their baby already knows a little
English. ( This always helps lighten up a potentially difficult
situation.)

Esther Grunis,IBCLC
Lis Maternity Hospital
Tel Aviv, Israel where summer is hanging on for dear life......
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