Dear Lactnetters,
In response to the NICU thread and the ped. who recommended solids and
vitamins to an otherwise healthy, thriving baby.....I have been a parent
liasion for newly diagnosed babies with cystic fibrosis in the hospital where
I work as an LC and by phone with moms across the US and Canada for several
years and also facilitated a local support/info group for parents and adults
with CF.....
One common reaction to doctor's orders or treatment plans, especially as
it applies to breastfeeding, is a blind acceptance......to question his/her
authority is threatening to these parent's as they deal with this
diagnosis.....they feel they will be seen as non-compliant or as superceding
their baby's prognosis....
Most are reeling from the spector of the diagnosis, the logistics of
dealing with insurance companies and hospital protocols, time out of work, the
worry that their other children (siblings or future) may have this genetic
disease and the loss of the BFing relationship is back-burnered if there is
concern about baby's weight ....and usually there is, since pancreatic
insufficiency (and the accompanying malabsoprtion) is apparent in the majority
(85%) of these babies.....
The similarities are the same for NICU babies or any other comprimised
babies, or even healthy babes that are given advice from the pediatrician
(whether it is to supplement, give early solids, wean, pump and dump
etc).....as Carol said the parents even fear retaliation in their baby's care
or the all-threatening "Well, look what happened when you didn't follow our
orders"....I've been there myself, when my daughter was diagnosed I was less
than the usual assertive advocate mother I had been theretofor because I was
nagivating new waters and dealing with new docs and I didn't want to be seen
as "non-compliant".....mothers that are only familiiar with allopathic
medicine are even more in that mode....soon I Iearned the "squeaky wheel gets
the grease"...
To summarize, depending on the hat I'm wearing (hospital LC or Parent of a
CF baby) I gently remind the mom that this is HER baby and to ask questions,
read all she can, be an advocate, document and question when she doesn't
understand something or someone.....like Patrica D. said "Many mothers, or
other mothers have found" is a good buck-passer if you hospital
affiliated.....alot of parents are so much in shock or denial that they are
not in a place to do this yet.....as LC's we deal with this daily.....but for
the NICU moms it seems to be elevated....please share other ways you have
found helpful in empowering these parents in the face of contrary
breastfeeding medical advice....
On a lighter note, my chiropractor FOB used to say MD stands for "Me
Dictator" (just a joke, Jack, Andrew, Rob, Nancy, Gail et al).....also, a
dentist I worked for long ago had a plaque in his office that read "There is
nothing that the Dentist can do that will overcome what the patient will not
do", interesting control-type message, huh? PS. Breastmilk is the best
thing a Baby with CF can put in his mouth or gut, IMHO
Jan Ellen Brown RDH, IBCLC
Charlotte, NC USA where is warmer and rainy
and who types with...because I am left-handed and hit wrongs keys if I go to
Caps and Shift....!
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