Marsha and all,

After my son's heart surgery, he developed chylothorax and was put on a
medium-chain triglyceride formula, Portagen.  He had not yet been to the
breast due to being on the ventilatior and several other complications, and
was finally off parenteral nutrition and being ng tube fed because of nerve
damage.

I asked about having the fat removed from my milk and using an alternative
source.  They looked at me like I had three eyes, and since I had many other
things to worry about, I gave up, and learned how to mix the Portagen and use
the feeding pump.

Following is an article some of you may have seen about a mother who did just
that, she had her milk spun down.

Fortunately, my son's chylothorax was temporary, and was weaned onto my milk,
then went to breast at three months, never having nursed before.  He is now
thriving, still breastfeeding,at age three.

I've never introduced myself, with 1200 people on LACTNET, I'd hate to think
how many posts there would be if everyone did!  I am a mother of three
breastfed children and LLLL.

--Kate Holly in Maine
***************************************************
 from Sept. 23, 1995 Birmingham News.

Giving Breastfeeding a New Spin

With a lot of help, a UAB
(University of Alabama--Birmingham) nurse created
skim mother's milk for a tiny transplant patient.

by Betsy Butgereit, News staff writer

   Jeremiah Crapps was only 2 weeks old when doctors gave him a new heart
because the left side of the one he was born with was too small to pump blood
for his body.
     Immediately, he developed a rare, life-threatening reaction to some of
the fats in his mother's breast milk, seemingly putting an end to Donna
Crapps' plans to breast-feed (sic) her tiny infant as she had his two
brothers.
     But when Jeremiah didn't seem to thrive after a couple of weeks on baby
formula, Mrs. Crapps came to University Hospital nurse and lactation
consultant Connie Carlisle with a question:  "Can you get the fat out of my
breast milk?"
     Mrs. Carlisle responded: "I don't know.  I'll see what I can find out."
     The quest led Mrs. Carlisle through a chain of friendly souls in a wide
variety of jobs, inside UAB and out, who often put their own work on hold to
help her do something for one sick baby that may never have been done before:
 create skim breast milk.
     Jeremiah has thrived in the 32 days he's been on it -- gaining weight,
developing better kidney function and absorbing proteins better, important in
both healing and infant growth.  He's out of intensive care and may go home
soon to Florence.
     And some day, Mrs. Carlisle's discovery may help other babies with
Jeremiah's condition or special eating problems.
     "I just don't know how we'll ever thank her," Mrs. Crapps said Thursday.
 "She went way beyond the call of duty.  She did it like we were somebody she
had known before, like I wasn't a stranger."
     The problem Jeremiah developed is called chylothorax.  It caused one of
the fats from his mother's breast milk to build up between his lungs and the
wall of the chest, squeezing his lungs.
     While babies need lots of fat to gain weight and grow, fats are absorbed
into the blood in different ways.  One fat from breast milk, medium-chain
triglycerides, crosses the intestinal wall directly into the bloodstream.
     Another fat, long-chain triglycerides, enters the lymph system from the
intestines and then travels to the upper part of the chest, where it enters
the blood stream.
     After Jeremiah's heart surgery, that lymph mechanism was disrupted, the
long-chain triglycerides began building and doctors took him off breast milk.
     Mrs. Carlisle couldn't find any reference to defatting breast milk.  So
she did what seemed to her to be the most logical thing:  she called Barber
Dairies Inc., where she hooked up with Steve Thomas in their lab and asked
him how they made skim milk.
     He described the big machinery they used, but then told her they test
milk using a small centrifuge, a machine that rapidly spins liquids.
     He offered to spin the breast milk at Barber's, but also told her that
she should be able to find the same machine in any UAB laboratory.  All she
would have to do, he said, was figure out a way to siphon the fat off the
top.
     With no budget, but lots of energy, the blessing of heart surgeon James
K. Kirklin and the cheerleading of her boss, Melanie Salsgiver, Mrs. Carlisle
began a trip that took her to:
     *Sheila Hendricks, who oversees UAB's labs and decided the problem
needed to go to a research and development lab.
     *Marilyn Hall, in that lab, who stopped what she was doing and for two
days helped figure out how to spin the milk and how to use an aspirator to
suck off the fat.
     *Dr. Glenn Horton, who did a nutritional analysis of the milk and said
it was nearly fat-free.
     *Rosemary Yancy, UAB's chief dietitian, who figured out how much
medium-chain triglycerides to add back to the milk so Jeremiah would have
enough fat.
     *Ann Folker, who is a sales rep with Curtin Matheson Scientific Inc., a
national distributor of laboratory supplies and equipment.  Mrs. Folker
donated 500 centrifuge tubes into which Mrs. Crapps pumps milk so Mrs.
Carlisle can spin it.
     *And finally to John E. Townsend, who is a specialist in the Alabama
Regional Histocompatibility Laboratory, which helps match organ-donor tissue.
 He made room in his lab for her when the R&D lab needed its equipment back.
     Mrs. Carlisle spends 1-1/2   hours a day, every day, spinning the breast
milk.  She uses about 17 tubes to give Jeremiah about 26 ounces of milk each
day.
     "I believe if we had been someplace else but here, a research hospital,
they wouldn't have been interested in moving forward and we wouldn't be doing
this," Mrs. Crapps said.
   Mrs. Crapps and Mrs. Carlisle hope Jeremiah will be able to take his
mother's breast milk by the time he goes home.  But if not, Mrs. Carlisle
already is trying to find a way to help the Crapps family in Florence, where
daddy, Kerw@pa Florence city worker, and brothers Justin, 14, and Jared 10,
are waiting.
     Mrs. Carlisle now plans to write an article about Jeremiah's case.  She
hopes it will be published in a medical journal and perhaps lead to some kind
of study of the process.
     She's startled when asked why she undertook the quest.
     "I never stopped to think about it," she said.
     Later, she adds, "I look at it like this.  God is the creator.  The
mother is the producer.  I'm the processor.
     "And I had a whole bunch of technical assistants."

End of article.



In a message dated 97-05-06 02:16:21 EDT, you write:

> Date:    Mon, 5 May 1997 20:40:05 -0400
>  From:    "Marsha Perryman, Rn, Cle" <[log in to unmask]>
>  Subject: No Subject
>
>  Need help!  Have client with 2mo twin boy. Advised by MD to stop
>  breastfeeding
>  after baby diagnosed with congenital chylous ascites. Infant had a hernia
>  repair and ascites was noted.  The fluid was tested and found to have a
high
>  fat and protein content.  Fluid is from an immature lymph node.  The G.I.
MD
>  put the baby on Portigen.  Infant has problems with this formula, never
had
>  problems with breast milk and was gaining at least 1-2oz per day.  Twins
> were
>  premature, 32wks.  This particular twin nursed well from the get go, the
>  other twin prefers to drink pumped milk.  The stress is causing decreased
>  milk production.  Also, Mom is questioning the formula.  Can anyone help?
>