Jay, I have worked closely with two infants with Turners Syndrome.  The
literature on the subject (some good stuff is available through the Turners
Syndrome Foundation) is helpful.  It points out that the babies often have
feeding related problems due to muscle tone issues and, often, due to
unusually shaped palates.  One of the girls I worked with had a channel V
palate.  It affected her early sucking competence and as an 8 mo old, she
went on a nursing strike caused, as it turned out, from something getting
stuck up in the palate crevice.  Because these children are at risk for
dwarfed growth, their early growth is critical.  I think human milk and the
potential it offers to double or triple birth weight by the 6th month is
vital.  I emphasized to both moms that if early feeding weakness compromises
milk supply, post feed pumping is critical to protect production.  We
supplemented both babies with pumped hind milk and both achieved excellent
growth.  The second child had more complications, as is sometimes the case
with this syndrome.  She had a heart defect that required surgery, severe
reflux, and some of the unusual physical features (rolled ears and puffy
feet.) That baby is pictured in the Breastfeeding Atlas, and we ref. a study
that supports auricular splinting to correct the rolled ears and improve
appearance (as these girls often have self-esteem problems later).  I think
that both the moms I've worked with would be very willing to speak with your
mom.  If you will have her contact me, I will put them in touch.  The first
child with TS that I worked with has done amazingly well (although she was
awful with solids initially) and her endocrinologist feels she has the best
growth she's ever seen in a child with this condition.  The mother
persevered through all the feeding problems and we worked together closely
for two years.  I still hear from the family occasionally.  The little girl
is in grade school now.

Barbara Wilson-Clay, BS, IBCLC
Austin Lactation Associates
LactNews Press
www.lactnews.com

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