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Prayer Request for Baby Charlotte

2K views 27 replies 22 participants last post by  bajamergrrl 
#1 ·
We got the results back from Charlotte's newborn metabolic screening today and she tested positive for Galactosemia. Our ped does seem fairly confident that this is a false positive (though he could just be acting confident until we get the next test done...), but we have to take her tomorrow morning to the hospital for a blood draw, and then should get the results back by Thursday. Until then I just get to worry...

She has been such an easy baby to this point, but now I'm worried that her easy-going-ness has been lethargy. And, she didn't spit up until a couple of days ago but has now been projectile spitting/vomiting...could totally be a coincidence but maybe not, too.

The only treatment (no cure) for this disease is to cut out ALL galactose (including breastmilk) and put her on soy or special formula. I know that formula is not the devil, but breastfeeding (as most of you probably know!) is so important to me, so the prospect of not being able to breastfeed her has pretty much had me in or on the verge of tears since I got the results. Also, even with a special diet, the disease can cause learning delays and reproductive problems.

Any prayers our way would be much appreciated
 
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