The first person with a baby with a cleft I ever worked with was a Saudi
Arabian woman who clearly had the attitude that of course the baby could be
breastfed.  I assumed then (and now) that that must have been an attitude
which came out of a cultural expectation.  It made me very curious about what
"happens" to infants with this kind of problem in other cultures. It varies.
I have read that the word "stigma" which carries the meaning of an outer sign
which reveals something about an inner state (i.e. stigmatized) was
historically applied to infants with this condition.  In some places such
infants were abandoned and left to die.  Other cultures seem to have no
problem with caring for kids with it.

Over the years I've cared for a fair amount of infants with clefts, and their
mothers -- no matter how dedicated --have always had a tremendously difficult
time feeding them.  The cleft means the baby can't create negative pressure
in the oral cavity --the way to hold the breast in the mouth and the way to
create a pressure differential which facilitates the flow of milk from the
positive pressure inside the breast into the negative pressure space  created
inside the baby's mouth.  Try sucking on a straw with a hole in it and you'll
get the point.  Moms have a lot of trouble keeping a good milk supply because
 often baby can't adequately drain the breast.  Baby may also have so much
nasal regurgitation and choking that there is aversion to feeding.  I think
it takes a lot of effort to swallow without drowning for these
babes.Remember, the soft palate is a muscle which is vital to swallowing.
 They tire very quickly and feeds tend to be short. Post-feed pumping and
alternate delivery of hind-milk helps their growth a lot.    Breast milk is
critical to the health of babies with clefts.  There is an important new
article on breastmilk and reduction of otitis media with middle ear effusion
(glue ear) in infants with clefts.  These kids have constant respiratory
problems.  Usually moms have to pump to keep up a supply adequate for growth.
 Its possible with some to use feeding supplementers and upright nursing esp
on a full breast.  Others seem unable to get much out at breast and must be
fed expressed hm some other way.

There was a wonderful poster at the last ILCA conf. which showed a feeding
technique of an African doctor who also noted difficulties feeding babies
with clefts in his village and regional care hospitals.  He cut apart a
bottle nipple so that he created in essence a cheap palatal obturator (fake
palate) which he then slipped over the top of another bottle teat so that the
flap of the cut teat sealed the cleft while the baby bottle fed expressed
milk.  Obturators have helped babies I've worked with. I refer to a pedi
dentist with experience on a cleft palate team. Clefts of the palate often
can't be surgically corrected until later due to head growth in the early pp.
 I think some are now being done as early as 9 mo. but I've not heard of them
before then.  Lips can be repaired very early, but they don't pose any real
difficulties to nursing.

There was a case of child neglect tried some years back where a  woman  was
accused of letting her baby die for the sake of her belief that the child
(who had a cleft) could breastfeed.  My understanding of this tragic incident
is that this was the 2nd baby with this birth defect the woman had
nursed.(Genetic counseling is impt. as incidence of another infant with same
condition rises after the first birth.)  The first was a twin, and the normal
twin essentially "drove the train" for the weaker sucking twin.  Because the
well twin stimulated the milk supply, got the let-down started, etc. the
other twin grew adequately.  Based on the successful first experience, the
assumption was made  that cleft palate babies could be breastfed.  This is
not always the whole story and case-by-case assessments must be made for all
infants with physical challenges.  I monitor this kind of baby very closely.
I have had  mothers feed hm to their babies until after the surgical repair.
 Some were then successful moving to unassisted breastfeeding.

  I'm working with a immigrant Vietnamese family who have a daughter (now 10
mo old) who has the most cavernous cleft I've ever seen -- so large (no
palate at all) that the surgical team is wondering if they can successfully
close it.  With an obturator and months of pumping and haberman feeders and
other bottles they kept her on exclusive breastmilk for 6 mo, partial since
then. This family was interesting.  I got friendly enough with them for the
father to confide in me that he didn't know who to believe, and wondered
whether it was considered rude in our culture to question the doctor.
 Apparantly, he worried very much that any inquiries or requests for
explanations would be perceived as challenges to the authority of the doctors
(and revenge might be taken on his baby girl.).  He was also very much more
likely to credit the older doctors.  He ever so politely let me know that my
being a woman had put him in an awkward position.  He liked me and tended to
think what I said made sense, but felt very conflicted when my opinion was
diff. than the doctors.  I told him that in our culture people think that
asking questions is a sign of intelligence and would gain him respect if done
politely.  This helped him a lot in navigating the system.
Sorry this is so long, but I think people working with infants with cleft
need to do a lot of reading in the bfg and in the plastic surgery lit.
Barbara Wilson-Clay, BSE, IBCLC
Austin, Tx (priv.pract.)