Tuesday, March 22, 2011

Good Days for Newborns Ahead - but support from each state is needed

You never know.

You just never know. Believe me - we got lucky with Gwen. Twice.
  
The first time was at her 20 week ultrasound - her heart-defect could have very easily gone unnoticed. It happens frequently. Her next big hope would have been a simple "pulse-ox" test. It is, since Gwen was born, now recommended for all newborns by the U.S. Department of Health. It is currently up to each state to adopt the screening as standard. But you can always ask and insist they do it on your newborn. 

Our second bit of luck was that they found her blood disorder before it threatened her life. Being born at a Children's Hospital with the intention to open her chest and repair her heart - she got a complete blood work up to screen for any immune issues.

Well, I'm thrilled to learn today that for all babies (who btw already get a drop of blood taken to test for other treatable diseases), now babies have one more bit of Hope mixed into that drop of blood.

"UCSF doctors have developed a test that, using just a drop of blood taken within hours of a baby's birth, can determine whether that child has a rare but potentially fatal immune deficiency disorder.

'One of the most extraordinary things in early newborn screening is being able to address something immediately,' said Gail Margolis, chairwoman of the public affairs committee of the March of Dimes, which supports the newborn screening changes. 'In this case, a child could die from very serious infection. These kids, you wouldn't know there was anything wrong without screening.'


This is not what Gwen had but I can imagine this test would have exposed her complete lack of white blood cells. However, there is a little boy Gwen knows, if you will, who lost his life to this disease, named Bodie.  How did his family find out what Bodie died of? Not until Bodies little 7 month old brother, Brayden was diagnosed after falling ill to an infection. Brayden currently is battling this disease at Duke. Thank God it was diagnosed in time - however, it almost wasn't and right now it's a tough road for Brayden.

No doctor has a clue why it happened to us and to our child. Please know, your newborn is probably super healthy and as perfect as they look. I'm not trying to be alarmist, I really just want to share what I know, now that I'm here and pay such attention to this sort of thing- which is - how can we make sure all babies who appear healthy, who's parents are healthy like us, don't end up finding things out too late. 
I'm SO excited that since Gwen was born and celebrated her first birthday - big advancements in Hope have occured. Please, dont' scoff at these, don't say it's over-testing, or think for a moment it is putting your new baby through anything unecessary. Instead, know about these things and ask for these tests by name - and help make this routine. 
"Every newborn in the state is pricked by a needle hours after birth, and a blood test is sent to a lab to screen for more than two dozen types of diseases, including sickle cell anemia and phenylketonuria, or PKU, a metabolic disorder that can cause mental disabilities and seizures if left untreated....The screening tests cost about $100 per baby, and are almost always covered by insurance or Medi-Cal. The SCID test would add another few dollar.

...doctors are trying to get the blood test added to the state's newborn screening program, a move that will require legislative approval. Legislation was introduced last month by Assemblyman Richard Pan, D-Sacramento, and a vote is expected this summer.

Some other states are getting on board, and they may be doing it kicking and screaming, because they don't have an extra dime to spend. But it's so important from a medical point of view"

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