I have seen several babies with these tiny clefts of the soft palate and my
general impression is that they can cause tremendous difficulty with
breastfeeding.  In one case the mother was able to continue using the
breast for some nutritive sucking and a great deal of non-nutritive
sucking; she augmented the baby with EBM and formula using an SNS to ensure
adequate growth for about 4 months.    In at least 6 other cases the babies
stopped nursing at the breast completely and the mothers provided
breastmilk by bottle from  a few months to a year.  The last case was the
most significant because this mother found out about early surgical repair
for the soft palate and had this done at 4 months and then she was able to
get her son onto the breast within a week of the surgery and  I know she is
still breastfeeding him, at three years of age!!  This mother had a full
milk supply from pumping until  the time of surgery.  This baby had stopped
breastfeeding at around 3 weeks; his inability to effectively suck at the
breast combined with regular bottles made him refuse the breast despite the
mother's efforts to keep him there, even partially.  This baby was also
missing his uvula ( which no one had recognized until he was a toddler and
consequently he has had difficulties with swallowing solids and speech
development)  The soft palate is an extremely important component of the
oral anatomy; it contains 5 sets of muscles and the uvula is attached as
well; when there is damage or a hole in this tissue the ramifications for
sucking, swallowing and later speech are enormous.  This little one is
extremely fortunate to be breastfeeding; the bonus of complete nutrition
and the strengthening of those oral muscles for speech into his third year
has to be significant!!!  Surgical repair this early is extremely
controversial and I understand that  only a few cases have been done,
internationally.  I personnally have had a special interest, for over
twenty years, in breastfeeding baby's with oral clefts and I caution us all
to realize that these mothers will have to pump to provide enough
breastmilk to ensure adequate growth for these babies; supporting the
babies at the breast is the ideal but we also have to realize the
tremendous demands on the whole family.  Full time pumping to provide
exclusive breastmilk for longer periods ie: 6-12 months is beneficial needs
our support.  Also the family needs time to grieve initially and then they
have an overwhelming number of medical visits to deal with in the early
post partum period.   These babies also have TROUBLE feeding period -
sucking and swallowing are extremely tiring and adequate weight gain is
particularly difficult to attain and feedings consequently take much longer
than normal.  We must provide all the information as accurately as possible
and let the parents make the ultimate decision; supporting long term
pumping may be the most realistic option and may be the most feasible IMHO.
 I have found that when a great deal of effort and focus is placed on
establishing breastfeeding; the mother switches to formula by bottle within
a few weeks - so my advice is be careful - ask the mother what she wants to
achieve.  In Alberta we now have electric breast pumps available free for
families with babies who have clefts - so we are following these families
and so far the babies have been remarkably free of upper respiratory
infections and ear infections during their first year of life.  And the
mothers feel so empowered by being able to provide breastmilk for long
periods of time.  We all know how easy it is for women to feel they have
'failed' at breastfeeding; these mothers need to know the real data on
breastfeeding rates for babies with clefts of the hard or soft palate and
the reality is almost nil according to our research.  We have to be careful
not to be a part  of the problem and in setting them up for 'failure'.
Babies who have only a cleft of the lip can and do successfully breastfeed;
assistance with latching may be all that is required.
I look forward to discussions on this ; feel free to email me privately
Maureen Fjeld, IBCLC
Calgary Breastfeeding Center
Calgary, Alberta, Canada
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