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Monday, April 9, 2012

The importance of Newborn Screening

Lately I have been thinking a lot about how lucky we are to have two healthy girls.  The odds would have been against us in a country without expanded newborn screening, in a state not testing for Classic Galactosemia, or simply refusing the test.  We could have refused the test out of ignorance just because the perceived notion of pain to the infant.  That obviously was never our intent, especially since the first I read about the test was in the hospital after delivering Alena, and because the hospital staff had erroneously not performed the test had I not reminded them.  But here we are - lucky and yet there are too many people still unaware about this amazing test.  Yes, truth is that most likely Alena would not have survived.  Saving her was only Newborn Screen test, not me, not us - there was nothing we could have done.  We knew something was not right - but what?  What saved her was the physician tracking us down, and the physician immediately putting her on antibiotics as soon as the diagnosis came in.  That is what saved her!

Luckily, we never had to experience anything like that with Mia Rose.  The reason for that is also simple - the Newborn Screen test.  For our second child we had also arranged to purchase an additional, supplemental test as Oregon does not screen for all disorders on the panel.  Unlike Alena, she had not had anything but Soy formula so changes for her getting ill were much more remote.

What would have happened if, the test had not been performed on either of my children? -  One thing many people do not know is that the Newborn Screen tests for disorders which are treatable if detected early.  Even so the children may appear health at birth babies with these disorders may decline in health, have irreversible damage, or die. Here is one family story which posted at the Web-site of the Save Babies Through Screening Foundation http://www.savebabies.org/family-stories_nora.html The Newborn Screen prevents just that for these treatable disorders. Please pass this information along.  It could save a babies life! And yes, many people have never heard of any of these disorders, or have any family history.

Here is a fantastic video by the Save Babies Through Screening Foundation it explains what happens and what to expect from the test http://vimeo.com/34898727.  Please watch it and also visit this amazing, resourceful web-site www.savebabies.org

Our happy and healthy girls - health and alive because of Newborn Screening