800-FIGHT CF (USA)

McNeil Pharmaceuticals puts out a *very* informative booklet, _Intro to
CF for Patients and Families_.

Jan Ellen Brown gave an excellent session on cf and bf  at the last ILCA
cnf in Scottsdale.  She said about 20% of cf babies suffer from GER.

She suggested the following as ways an LC can support a mother of a baby
w/cf:
--recognize stages of maternal grief
--clarify nutritional goals and help experiment w/enzymes
--run interference w/ other members of the health care team who may
discourage bf   (mothers are unwilling to antagonize HCPs b/c they view
them as their baby's   lifeline)
--share written materials; put in touch w/other mothers with children
w/cf
--test weigh as indicated; supplementation with donor human milk or
manufactured      baby milk; bottom limit of weight gain; once HCPs see
how much the baby is taking,
   HCP support for bf often rises
--reflect issues unrelated to cf:  growth spurts, night waking, sheltered
feeding     sessions, etc:  normal bf management
--encourage self-care for the mom:  her focus is (understandably) on the
baby
--recognize financial constraints/insurance issues
--refer to "baby with cf" rather than "cf baby"  (he is a baby first, not
a disease);
  NEVER call them cystics <shudder>
--listen.....listen.....listen

Karen Zeretzke, MEd, IBCLC
Baton Rouge, Louisiana
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