Hi Veronica,

I recently worked with my first such case.  Baby was also full term but in
regular nursery.  Breathing was minimally affected (unusual for Pierre
Robin).

The best position is hard to say. None of them are good.  Baby looking down
at the breast maximizes gravity's ability to help bring tongue forward.
Baby sitting up maximizes baby's ability to handle milk (not so important in
first few days when flow is low).  Asymmetric latch (leading with the chin)
maximizes the potential for tongue to contact areola.  Sadly, it may all be
academic.  This is a very difficult condition for direct breastfeeding.
Maximizing the intake of breastmilk is the priority goal.

With my recent case I felt these things were critical:

Assure baby can continue to breathe, a few wind up with tracheotomies, many
need to be prone at all times to breath well, some need home apnea
monitoring, some (like my case can breath OK most of the time but when
feeding have trouble unless held in perfect neutral alignment and gurgle if
head is at all tucked to chest or hyper extended) and only need to sleep
prone as a precaution.

Assure baby can feed safely (aspiration is a big worry) whatever method;
failure to thrive is common.

Maximize milk production.

Get mom and baby comfortable with Haberman feeding (this was the one that
worked. Mom NEEDS TO KNOW SHE CAN FEED HER BABY!

Introduce direct breastfeeding as a possibility (icing on the cake) but not
a probability.
The combination of the cleft and the extremely posterior chin and tongue
make it almost impossible. We tried; in this case it didn't work.  We left
open the possibility of continuing to try, encouraging comfort sucking and
emphasizing providing the milk regardless of the delivery system.

I also wanted to do these things:
Get the family set to go home with doubles of all supplies (pump kits,
Habermans, cleaning    supplies) and rental pump in hand.

Get family set up with a workable organization plan to allow for long
feedings and pumping and practice breastfeeding sessions along with all
their inevitable doctor's appointments (2 - 4 a week at first).

Get parents able to recognize adequate intake (even with Haberman baby may
not be able to take enough food in to thrive).

Have at least 2 people able to feed the baby safely and effectively with the
Haberman.

Give family plan for back up LC help.

Make sure family and Pediatrician knows the value of breastmilk feeding even
if direct breastfeeding doesn't work out.

Allow family to ventilate.

Resources for you to check:
Search Lactnet on Pierre and Robin but not syndrome (many call it sequence,
many leave out both "S" words)
Read www.widesmiles.org

GOOD LUCK!!!  Carla

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