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Date: | Thu, 14 Feb 2008 20:22:27 -0500 |
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Phyliss and Karleen,
You may remember a year and half ago, I posted about my granddaughter
who has "citrullenemia" which is a very rare metabolic disorder. Most
babies born with this go into a coma
and die before one even knows anything is wrong. My daughter in law
was breastfeeding (a real pro, since this was her 4th) and knew by the
5th day that something was wrong since Karly was sleeping too much.
About the same time she took the baby in, the newborn screening report
came in and she was immediately admitted to ICU. She cannot metabolize
protein so was taken off the breast and put on special formula which
they say she will have to drink ALL HER LIFE. This was heartbreaking
and cruel irony for our family. I tried to come up with a way for her
to still go to the breast and get the formula but not breastmilk.
Karleen, you suggested a "blind" nipple shield with a supplementer but
with all the trauma going on, my dil just couldn't seem to manage it.
I still think it would have worked.
I wonder if the shield manufacturers ever have any "seconds" nipple
shields that haven't had the holes punched in them? Or, maybe a part
of a thin hydrogel pad would stick to the inside of a shield? Any
other ideas of how to stop up the holes?
An update on Karly: She seems to be doing all right with her formula
and can eat 6 grams of protein a day. She eats mostly fruits and
veggies. She is about 3 months behind developmentally and may have a
hearing problem. She is way below the charts in growth, but is a pure
delight to her family. A geneticist in Oregon (Dr. Harding, Portland)
has taken a special interest in her and travels to Idaho periodically
to evaluate her. She is one of the few babies with this disorder to
survive past the first week.
Phyliss, good luck with your case.
Pam Wiggins, IBCLC
www.breastfeedingbooks.com
www.breastfeedingdvds.com
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