Heidi,

The correct name is Smith-Lemli-Opitz Syndrome.  Here is a URL with some
general information about this condition.  Ann Cagigas (are you there,
Ann?) worked with a client who had babies with this problem and posted
to Lactnet about it.  You might check the archives for Ann's posts.

http://members.aol.com/slo97/index.html

Last fall the baby of some high school friends was born with SLO.  She
was given a prognosis of 2 weeks, but lived long enough to be discharged
to home under hospice care.  With lots of love and devotion from her
parents, she lived 6 weeks and died in her sleep early one morning in
her parent's bed, sleeping between them.

I didn't have any direct contact with them, but info was relayed through
my sister who lives in the area.  Libby was never orally fed, due to
severe pyloric stenosis.  She also had extra digits, a cleft palate and
a 2 chambered heart.  To the best of knowledge, this syndrome has
varying degrees of severity.

Hope this URL is useful.
Kathy


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Kathy Koch, BSEd, IBCLC
LLL Leader, AAPL
mailto:[log in to unmask]          Great Mills, MD, USA
http://www.prairienet.org/~sak/maya.html   (Maya's Angels)
"Within the child lies the fate of the future."   Maria Montessori
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