Hello!
Alright, here is the story.
One of my lactation clients has a dear sweet blessing of a baby named Emma.
Emma was born with Fanconi Anemia. Both parents are carriers. Emma is now
about 4 months old.
Before Emma was 4 days old, she had to have Open Heart Surgery to re-plumb
her heart, as it was not put together right. She is also without thumbs
(common in Fanconi), is missing a kidney, has one of her ears fused over
(not sure of hearing status yet), and DID have severe Oral Aversion issues.
Emma nursed immediately after she was born from her mother's sister, as her
mother was too exausted to even try, near passing out. She did nurse well
that ONE time. The family is very very close, and her mother had no problem
whatsoever with her sister stepping in temporarily in this way.
Her parents were (ARE) committed to the exclusive use of breastmilk for her.
Her mother has been pumping from day 1, and she has been receiving ONLY
mothers milk via her feeding tube, up to a few weeks ago. NEVER a drop of
formula, despite MUCH perssure in the NICU.
The main reason, aside from the obvious ones, that her parents are so
committed to breastmilk is that Emma has pretty much a 100% chance of
developing cancer as a child. She will most certainly need a Bone Marrow
transplant later to extend her life at all. It is said that she will most
likely not live to see adulthood.
With all these things against her, she is a bubbly, lively, full of smiles
baby. A blessing to her parents. But all of those reasons also stregthen her
parents resolve that she NEVER receive formula, as anything that compromises
her ability to fight off illness is being avoided at all costs.
Emma is now nursing from her mother's breast, thanks in part to a few visits
from yours truly, but mostly because her mother was/is absolutely 100%
committed to getting her to breast. Her feeding tube is out. We taught her
to suck, and helped her to overcome her oral aversion (came from so many
times being intubated and suctioned in the hospital) through finger feeding,
and Kangaroo Care.
Here is what I need.
She is in the 3% for her weight/height. Currently a little under 9 lbs. She
is growing, albeit very slowly. She is not gaining at the rate which her
Dr's want. They are pushing her parents to supplement with formula. Her
parents of course, are sickened by this, and feel that breastmilk only is
the best choice for her. She nurses well now, has an excellent latch, and
suckles well and for good lengths of time. She is intaking plenty.
Her mother feels that they are not taking all of her physical challenges
into account, and are comparing her to normal, full term, problem free
babies, and are measuring her growth against those type of children. I tend
to agree.
What I need is, documented proof that breastmilk is by far the best choice
for a medically fragile baby. I need studies, something she can print out
and take to Emma's Dr.'s. Links, anything, that she can print out and take
to arm herself.
I have been searching and searching, but so far without success. I can find
plenty of anecdotal evidence, but that is not what is needed.
If ANYONE can help, PLEASE e-mail me OFF LIST at [log in to unmask] and I
thank you! Emma thanks you, and her parents thank you!!!
-Tami
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
Thank You For Choosing Mother's Milk Home Lactation Services!
Mrs. Tami Schlosser
Certified Lactation Specialist
Certified Lactation Educator
503-341-3207
[log in to unmask]
http://www.MothersMilkHLS.com
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