Would appreciate hearing of success stories re: Pierre Robin syndrome.
Is the Haberman feeder more effective than a soft bottle that the mother
can squeeze. She's feeding mainly EBM, pumping six times a day for a four
month old.
Infant will undergo surgery at 8 months.
*****I am on a support type list for cleft affected individuals and this
question comes up fairly regularly, the general consensus is that it depends on
the individual child and that it is impossible to determine what is going to
work best just by looking at the child or with just a diagnosis.  It is like
with most kids, craniofacially affected or not, they each have their own things
that they like and don't like, and one type of bottle will work where another
will be totally unacceptable.  The usual suggestion, and what we do with the
outreach program, is to take a sample of each bottle/feeding system and
demonstrate how the specific apparatus is used, and if there are different ways
to use one, as many options as we know, then let the parent try it out with the
child.  then move on to the next type, demonstrating and letting them try it
out.  Frequently, the child will absolutely refuse some of the choices.  Then,
and this is important, leave the most effective two or three choices with the
parent so that they have them available, sometimes baby will take one type of
system from mom and refuse that with dad, but take a second one with dad.
Also, leave some syringes and a cup or two with them, and show them how wo use
them effectively since frequently syringe feeding or cup feeding  are the only
options after a surgery, depending on the surgeon and the procedure.  It really
helps to have someone show you that there are lots of different options, when
my son was born, they walked in with a Haberman and told me that this was the
type of bottle that was available, and how to put it together and take it apart
and left me there.  Doug did not want anything to do with that nasty silicone
teat and would have nothing to do with it at all, I ended up using my Haberman
feeders much the way you use a syringe for finger feeding.  Knowing that there
are a lot of options out there if one does not work would have been really nice
and I would have felt a lot more confident in admitting that the Haberman just
was not for us.
When I go on an outreach visit, I take a Haberman, a MJ CP Nurser, a regular
baby bottle with regular and orthodontic nipples and rings, and covers or
hoods, a playtex nurser (bottle size of 4 oz, and bag size of 8 oz, this makes
it so that feedings can be assisted if necessary by squeezing on the bag that
protrudes out the back) (I throw in a couple of extra bags if they are still in
the hospital), a large syringe, some paper Dixie cups (or if I have any, the
silicone ones by Medela, or I will take one along to show them to let them know
that they are out there and may be easier than a paper cup) and I show them a
finger feeder (I have only one of them, so I don't let them keep it, but I am
not getting paid for these supplies, and can't afford to leave it) (I also
include some finger cots to show the parents some options on how to let
relatives feed the child if a finger feeding is desirable for whatever reason.)

I also show them ways that I have learned about to transport the filled baby
bottle (the haberman, for one, is particularly difficult and can make a huge
mess and leave the parent feeling very frustrated that they can't go anywhere
with the child because transporting their food is a nightmare)  From putting it
all in a zipper freezer bag and living with the mess, to putting it in a
regular bottle and using a cover and ring and carrying the nipple or feeding
assembly in a small zipper bag.  I like to show the parents how some of the
assemblies will work with store bought bottles, for instance, most of the
evenflo bottles will work with the MJ or Haberman, the glass ones usually don't
in my experience, though.  Many nipple rings that you can buy in the store will
work with the MJ setup, so using the little covers (disks they are also called)
with the nipple inverted also is an option.  This is a big deal to parents once
they start needing to go to doctor's appointments and so on, or even visits to
grandma's, although they may not think about it when with you.
I also show them ways to let the baby "comfort suck", and this may involve
"sucking" on a finger of a parent, or a pacifier or whatever.  This is
something that the parents are going to have to think about since comfort
sucking is an important part of development, particularly in the PRS kid who
needs to get teh chin developed, but, it can become an issue after surgeries,
because most, if not all, surgeons will not allow the use of a pacifier or any
type of soother.  This can add trauma to the child who has already been
frightened and taken away from mom, and then wakes up hurting and has lost use
of the arms, it is pretty scary for the kid anyway.  I present both sides to
the parent and let them decide what they want to do about it.
good luck
Vickie