I have to share about a very clever baby with a partial cleft of the palate.
The cleft is centrally located, begins at the junction of hard and soft
palate and has resulted in no uvula.  The little girl was term, over 8 lbs,
minimal birth meds. and good birth.  She's very alert and well put-together
neuologically.  Parents are bright and well educated (Dad is a chemist of
some kind, so is not put off by gadgets and rigged solutions.)  From the
moment the baby was born everyone (RNs, MDs, friends, etc) ALL encouraged
Mom to nurse, so she had a positive attitude about following thru with her
original plans.  She is part of an HMO which pays for LCs, and the MD immed.
got her in to see me for 2 visits.  I saw her day 4, and baby was only a few
oz below birth wt thanks to being started immed. pp. on pumped colostrum
finger-fed with feeding tube device.  Baby was aspirating a little during
swallows (wet breathing, some nasal regurgitation.)  Mom's left breast was
completly impacted.  We spent most of the visit working on getting the
breast unblocked with massage, cold packs and pumping. I considered this the
most immed. thing to manage so we could protect the milk supply. During this
time we were able to talk a lot about their shock and fear, she got some
tears out. We also played with the Haberman feeder.  Baby wasn't handling it
well, so I sent it home with parents with instructions to practice, because
the only way we could really get the feeding tube device to work was to
elevate it higher than Mom's head.  Baby's ability to generate suction was
so poor that we had to depend more on gravity.  I advised them to rig up a
floor lamp at home and suspend the feeding tube device bottle from it
similar to how an IV drip hangs.  This has worked great, and baby gained
back to birth weight and then some by the time I saw them for the second
time 6 days later (yest.)

During the second visit I learned that they have now had some success with
Haberman (good for when they must be out in public.) Mom has been, as per
instructions, pacifying at breast, so baby is willing to be there.
Engorgement is resolved, use of fenugreek and pumping has milk supply up to
4.5 oz at a pumping, and let-down is quick.  Baby is so clever.  On digital
assessment baby is using posterior tongue to elevate and seal the cleft so
she can get a bit of suction going. She then clamps jaws shut to pinch off
tube during swallows. She gets a nice little rhythm going. I can see milk
running back and forth in the tubes as she does this. She still needs a lot
of help with augmented flow -- i.e. bottle held above mom's head, but it is
so encouraging to see her cope with swallowing so well.  No wet breathing
today, no nasal regurgitation, and no motoric stress cues.  Just content
baby noises while feeding.  At breast, baby got a couple of actual sucks
both with and without tube device.  We wedged up breast tissue to try to
hold it in so she wouldn't have to, and I think that mom's nicely everted
nipples and rather supple tissue helps place things internally so baby can
occassionally make it work.  We can build on that so that baby can pacify or
hang out at breast and have some feedings take place there.  This will
normalize things for parents, give them some pleasure at seeing baby do what
they expected.  It will also comfort baby and assist keeping milk supply up.
If parents can persist, and surgery happens early (they are talking between
6-9 mo) maybe baby will get to nurse without so much work.

It is such a pleasure to see some success  with a cleft situation.  I am so
used to seeing early abandonment of bfg with clefts.  I think what has made
the diff. here is the early team work to get in there and help and support
these parents. Way to go hospt. LCs!  Way to go HMO! For me to get 2 whole
visits  to work out the strategies, and to practice techniques, and to have
time to deal with the counseling as well as the feeding logistics was such a
luxury! But of course much credit has to go to parents (whose determination
is always key) and to this very bright baby. And maybe the other babies are
just as bright, but just so starved and stressed by the time I usually get
them that it is a mess to get them to try anything-- esp. since mom's
usually have been so poorly managed they have no milk! I have asked the
parents to keep notes on a calendar if baby gets respiratory probs.  Just to
keep count.  I'd like to have something prospective in the way of monitoring
health of infant with cleft who has not yet had formula. What a concept.

Just thought you'd all like to hear a story where everything went right for
a change. :)
Barbara

Barbara Wilson-Clay, BS, IBCLC
Private Practice, Austin, Texas
Owner, Lactnews On-Line Conference Page
http://moontower.com/bwc/lactnews.html