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March 18th, 2013, 11:22 AM
CrochetingMama CrochetingMama is offline
Join Date: Jul 2012
Posts: 820
Originally Posted by sarahlorrain View Post
I asked my doctor about it and he said they don't do them regularly, only on babies that look like they are having problems, but that if I want one I can have it done.

Good for you for asking!

I hate that.. "only on babies that look like they're having problems". Because every single problem is always SO easily seen, of course.

Lily's disease is called an "invisible illness" - Why? Because just eyeballing her..unless she's having a really bad day...she LOOKS perfectly healthy. If you took a peek inside her, you'd see her pulmonary artery is enlarged and thick. You'd see one of her lungs is smaller with not as many blood vessels. You'd see that her heart has a hole in the wall that seperates the upper two chambers. You'd see that her aortic valve only has two flaps, not three. You'd see that her left bronchus is trapped between her pulmonary artery and her aorta. You'd see that the malformed lung is always a little bit more inflated than the other one is, because the narrowed bronchus means she has trouble getting air out of her lung.

You'd SEE a whole heck of a lot - if you could peek inside her - but since, God forbid, none of those defects are visible on the outside - then obviously she must be fine. /eyeroll

Even when she's having a bad day, its not like there's a big flashing Neon sign saying "she's sick! SHE'S SICK!" - What you see is a slight blue tinge to her skin, more noticeable around her lips and fingertips. What you see is her saying "I'm tired" before she should be tired. You see lounging on the couch, content to not do much at at all - which is not normal for her. She's very get-up-and-go. You hear her breathing more quickly and harder. She might even tell you "mommy, my chest hurts" or "I hurt" or "I don't feel very good"...but its not like her bad days instantly transform her into someone who *looks* extremely ill.


We KNOW - WE. FLIPPING. KNOW. that somewhere around 1 out of 100/125 children are born with a congenital heart defect. WE KNOW THIS - and yet we don't screen for possible heart defects 'unless they look like they're having a problem'. What utter and complete bullcrap!!

How in the HECK is it okay to not do a pulse ox? How can we, knowing what we know about the prevalance of CHDs, plug our ears and close our eyes and just pretend that every baby is fine? How can the people in charge of doing the newborn screenings let babies go home with their parents KNOWING that there is such a chance that they might be sending that baby home with a serious defect that they could have screened that could kill them? They COULD have screened for it. They just didn't. Because it might take 30 seconds longer. Because it costs for the equipment. Because, God forbid, they spend a little extra time to spare a family heartache.

And how can anyone, having been exposed to - if nothing else -the number of children born each year in the US with a heart defect - not have the balls to demand their child be screened if it is not part of the normal process? How can that be risked?? How STUPID do you (general, not you specifically) have to be to ignore such a common problem?!


Okay, off my soapbox now.

Utter and complete bullcrap.

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