Has anyone had experience with a baby with distal arthrogryposis syndrome.
they also have not ruled out Trisomy 18.

The baby has a very small tongue and very tight jaw.  The only way he has
been fed is by "working" a bottle nipple (now a Haberman Feeder) into the
space available.

He of course is being seen by many specialists.  The mom began pumping with a
M ..... pump but is getting very little (just drops of colostrum).  Two
problems with her lactating she recently had breast reduction surgery prior
to her pregnancy and with having to take the baby to another hospital
approximately 5 hours away has made it very difficult to find place and time
to pump.  They are home for a week before they have to travel back to
Birmingham, AL.  she plans to pay better attention to pumping.

Any help is appreciated!!