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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