I have been asked to write to the list about my experience with Moebius
Syndrome.
My son, Matthew, was born with this syndrome (also known as Cranial Limb
Disruptive Spectrum) in 1982.  His "defects" included sofe cleft palate
defect, club feet, depressed breast bone, high palate, hypotonia (especially
in his neck), no lateral eye movement, facial paralysis, one paralyzed vocal
cord and weakness on the right side of his tongue.  He can move his lower
jar up and down - so he chewed on the nipple but could not suck.
He has had about 45 surgeries - eyes, feet, palate, a tracheostomy for a
while.  He is now 21, autistic, mentally impaired, non-verbal, lives in a
group home.
He was fed by gavage for the first few months of his life.  Once aspirated
and developed pneumonia - which almost took his life.  At about four months,
when he finally came home, I fed him with a nipple with a large hole in the
nipple (pour a little in, wait for a swallow, etc.).
It is an awful syndrome - robbing the mother of any feedback - no smile -
very difficult to bond.  Add the trach and you lose vccalization. Very
painful.
The syndrome has many variants - some are worse than other.  It is a
syndrome that is not seem often and is often not diagnosed.  There are no
tests to confirm the diagnosis, and it is not a chromosomalo defect.
I will be happy to answer any questions.
Dianne Kemp BA, RN, IBCLC
Marysville, Michigan
Feeling sad remembering the son I dreamed of - now he does not recognize who
I am.

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