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Subject:
From:
Nicole Simmons <[log in to unmask]>
Reply To:
Lactation Information and Discussion <[log in to unmask]>
Date:
Wed, 24 Nov 2004 00:39:27 -0600
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Hi Karen,

Last year I "third party" helped a family whose baby had a cardiac problem.
Thought you might want to share this story with your mother.  They aren't
online, but I am pretty sure that this mother would love to talk by
phone-she is a very lovely woman and mother.

Sometime after birth baby was really struggling with the heart problem,
losing weight, and difficulty breastfeeding due to the hamster wheel
problem-too tired to breastfeed and so couldn't get enough calories and thus
too tired to breastfeed to get more.  At several points during the heart
treatment process, various docs involved would demand that breastfeeding
stop so that they could start giving baby formula and/or a high caloric
supplement.  The father, who is a dairy farmer, said, "Why would I feed my
child formula?  When calves are taken off their mother's milk suddenly, they
get very sick.  Formula fed cows are just plain sickly.  So I do not feed
that to my cows, they get their mothers milk.  My baby is already sick and I
do not want him to get sicker.  What guarantee do you have that this will
help my baby?"

So the family called up the nurse down here, who had setup the appointment
for them.  So then nurse calls me and asks if I have any information that
would support the continuation of breastfeeding.  Well we batted the problem
around for a while and then I had a lightbulb moment! I said "Hey I read
something on Lactnet and in Leaven
http://www.lalecheleague.org/llleaderweb/LV/LVAprMay03p27.html", about
spinning milk to REMOVE fat for a baby with chylothorax.  If the docs want
more calories in this baby, how about you have the mom pump, then spin it
and supplement the baby with the fat?   I know this isn't a new idea but I
had never heard it applied in this situation.  So I frantically dig up all
the info I can....  AND I sent her my sling so she could keep the baby skin
to skin.

So there were consultations all around and the hospital dietician even got
on Lactnet to read more.   (she was a really receptive to learning more-a
thoughtful person).
I faxed information to them, sent them links, talked to them on the phone.
(I get a lot of calls like this, where medical professionals ask me to help
them find research, data, etc-I think it's pretty exciting that LLL has that
kind of image with some of our docs.  Sometimes I have more of these kind of
calls, than calls from mothers!)

The medical staff gave the green light and THAT BABY STARTED TO PUT ON
WEIGHT!!!!!!    I mean that baby really started to thrive!  I wish I had
more details about the specific weight gain---but really it was incredible.
I was even surprised at how quickly this baby turned around.   And because
baby was getting stronger, baby had a better prognosis related to the heart
condition.   I should mention that mom had trouble pumping at first because
of all the stress, so the community came together and provided all the
breastmilk they needed until the mom could supply it herself.  That is
another wonderful success story for another time.  I am not sure how long
this mom ended up breastfeeding but I do know that it was for a good while.

The best part is that I finally got to meet this mom in person about two
weeks ago.  We hugged each other!  Baby is doing well!  Please email me
offline if you would like me to get her phone number.  My thanks to Lactnet
for being a good technical read and a source of inspiration!

Warmly,
Nikki Simmons LLLL in Missouri

-----Original Message-----
From: Lactation Information and Discussion
[mailto:[log in to unmask]]On Behalf Of Karen Gromada
I spoke to a mother tonight whose baby having a hypoplastic left heart is
going home until ready for next surgery at the end of January. She gave me
permission to post. The baby is 7 weeks old but 1 week when age-adjusted;
born at 34 weeks and now 41 weeks. The baby had prenatal in utero surgery
and more emergency surgery soon after birth. He has been mainly in a CCU and
is going home on O2, all kinds of meds, and feeding via NG only. He
kangaroos with mom, who BF two older children and is getting plenty of milk
via pumping. Earlier he was getting oral feeds via bottle and nuzzled at the
breast, but he apparently had an aspiration episode and did a backward turn.
He also has GERD -- surprise, surprise since being put on some higher-cal
formula too. Cardiac-wise, baby is apparently doing as well as could be
expected.

This mom is going home with very little support physical or emotional
support. She's apparently gotten no support for BF this baby in the short or
long term from the cardiac peds in the big city children's hospital CCU. She
feels a bit beaten down and intimidated. I didn't give her false hope but
what right does anyone have to give her no hope at all about BF? Since when
do these docs have a crystal ball? And why would they see mothers having any
BF success if they constantly create a self-fulfilling prophecy that it
won't work?

This mom would LOVE to "talk" online to others supportive of BF who have
cared for a baby with a severe cardiac condition, especially mothers with
such babies. As I recall, there are a few Lactnetters who may "fit" that
profile. If so, pleeeeaaaase let me know via personal email if you are
willing to correspond with this mother.

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