Barbara and other Lactnetters,
One thing that should be checked in a baby who ACTS like he has a cleft
palate but there is nothing to see,  is for a notch in the back of the hard
palate.  Sometimes the cleft begins there and extends down into the atlas,
involving the muscles and nervous tissue of the soft palate.  These types of
clefts are sometimes submucous and cannot be visualized.

One of the most common syndromes associated with cleft palate is
Velo-Cardio-Facial syndrome (sometimes called Shprintzen's Syndrome or 22q
Syndrome)  It is a deletion of a very small part of the long arm of
chromosome 22, and has a collection of problems associated with the
syndrome, including slow learning, behavioral abnormalities, narrow palatal
arch, midline carotid arteries, etc. etc.

Because a submucous soft palate cleft interferes with the musculature and
nervous tissue, it often causes really awful difficulties with swallowing
even if the baby can suck normally, which they usually can.

Diagnosis is made by getting a chromosome study and asking for a FISH test
to be done (Fluorescence In Situ Hybridization)

How come I know about all this?  Because our 5th child out of 6 turned out
to have this syndrome and we didn't have a diagnosis until he was 25 years
old.  I figured it out myself researching it on the internet, and it was
confirmed in the genetics lab a year and a half ago.

 As a child he had five surgeries in three different states, 8 years of
speech therapy, and had a  horrible time getting enough nutrition.  Breast
milk went down fairly well, but when we started solids, I could put a bite
of carrots or spaghetti in his mouth at noon and it would still be there at
6:00 p.m.  He didn't know what to do with it!  Drinking out of a drinking
fountain was not possible because all the water came out his nose.  In spite
of no visible cleft, and breast feeding, he had a new ear infection every
4 - 6 weeks, and lost much of his hearing until we got tubes in.

After dealing with this child for over 20 years and being unable to figure
out his collection of symptoms, I was delighted to FINALLY have a diagnosis,
even though he is now married.

 I have mentioned this syndrome to pediatricians a number of times where a
baby has some of the characteristics, and there have been several babies
with a positive diagnosis.  I think any IBCLC should check out the internet
references regarding this problem, its incidence and symptoms, because it is
more common than anyone previously thought, according to the research.

I would have done almost anything for an explanation of the problem when he
was a baby.  Hopefully, nobody has to wait 25 years for a diagnosis.  Also,
the child needs to know when contemplating marriage because it is a
transmissible genetic defect.
Deanne Francis, R.N. IBCLC
NICU

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